Brain Tumors
I won’t let a brain tumor defeat me or the people I love.
It’s a scary diagnosis but now I know the facts.
— Brain Tumor Survivor
Table of Contents
CHAPTER 1 / THE EMPOWERMENT APPROACH.........................1
You are not alone.................................................................................................. 3
Gaining control..................................................................................................... 3
10 actions you can take......................................................................................... 4
C H A P T E R 2 / U N D E R S TA N D I N G B R A I N T U M O R S ................................. 5
What is a brain tumor?.......................................................................................... 7
Defining brain tumors........................................................................................... 7
Diagnosing a brain tumor..................................................................................... 9
The treatment team............................................................................................. 14
C H A P T E R 3 / T R E AT M E N T O P T I O N S.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17
Empowered communication............................................................................... 18
Basic treatments & medications used for brain tumors..................................... 19
Long-term planning............................................................................................ 29
Managing late effects.......................................................................................... 30
Hospice............................................................................................................... 30
C H A P T E R 4 / M AN AG I N G C OM M ON SI DE E FFE CTS............................. 31
Location matters................................................................................................. 32
Learn what to expect after your treatment.. ........................................................ 34
Rehabilitating physical symptoms................................................................... 35
Headaches........................................................................................................ 36
Seizures............................................................................................................ 36
Blood counts.................................................................................................... 38
Gastrointestinal (GI) problems........................................................................ 38
Fatigue.............................................................................................................. 39
Cognitive and behavioral changes................................................................... 40
Anxiety and depression. ................................................................................... 42
Hormonal changes, fertility and sexuality....................................................... 43
Complementary or alternative medicine (CAM)................................................ 44
C H A P T E R 5 / Q U A L I T Y O F L I F E ............................................................. 47
Coping with your diagnosis................................................................................ 48
The value of support........................................................................................... 49
Relationships....................................................................................................... 51
Spirituality........................................................................................................... 53
C H A P T E R 6 / P R A C T I C A L C O N S I D E R AT I O N S ..................................... 55
Going back to work............................................................................................. 56
Employment laws and financial support............................................................ 58
Managing medical costs. ..................................................................................... 59
Practical, legal, and estate planning................................................................... 61
Death and dying.................................................................................................. 62
C H A P T E R 7 / C A R E F O R T H E C A R E G I V E R ........................................... 63
Care for yourself. ................................................................................................. 64
Making important decisions............................................................................... 65
Moving forward................................................................................................... 67
C H A P T E R 8 / R E S O U R C E S ........................................................................ 69
PROLOGUE
No one is ready to receive a brain tumor diagnosis, yet the National
Cancer Institute estimates that 66,300 people will be diagnosed for
the first time this year alone. In fact, there are over 688,000 people
in the United States who are currently managing life with a brain
or central nervous system tumor.
In this book, we’ve collected valuable
This book was created by the Cancer
resources, facts, and tips about the
Support Community and the National
medical, practical, and emotional effects
Brain Tumor Society, in partnership with
of brain tumors to help you (or an
neuro-oncology and psychosocial experts
advocate) gain control and learn how to
and the advocacy groups, Accelerate
cope with the diagnosis.
Brain Cancer Cure and Musella
You may find that when you feel
empowered to make choices you’re
comfortable with, you can develop a
renewed perspective on hope. This book
can help guide you. Flip through the
Foundation. It is also based on research
Throughout this book you will see
symbols that can help you identify
useful information:
Look for this symbol to
find helpful tips.
Look for this symbol to
find questions for your
doctor, or yourself.
Look for this symbol to
find “Things to Remember”
from each chapter.
Look for this symbol to find
useful organizations and
resources for more in-depth
information.
with 407 patients and caregivers in a
national survey and personal interviews
with several thoughtful, honest and
inspiring individuals.
pages to find information that seems
most helpful now, and refer back to
other sections later.
PROLOGUE
III
The brain is an elaborate, elegant,
THE BRAIN
and sophisticated mass of tissue and
nerve cells. It seamlessly controls our
personality, our senses, helps regulate
The brain controls our:
vital body functions, and controls how
Personality: thoughts, memory, intelligence, speech, judgment, and emotions
we move in our environment.
When abnormal cells grow in the brain
Senses: sight, hearing, taste, smell, and touch
Vital body functions: heart rate, breathing, and blood pressure
Movement: coordination, balance, and negotiating space
to develop a tumor, it can disrupt how
we function and will require treatment
considerations that balance how the
tumor is treated with how well our
brain operates.
Source: National Institutes of Health, National Cancer Institute
IV
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
— Tony, patient
The Empowerment Approach
CHAPTER ONE / THE EMPOWERMENT APPROACH
I’m a huge believer
that we have the
capacity to do great
things, even recover
from extraordinary
happenings. It is
within us. And with
some help along the
way, we can tap into
our inner “Superman.”
CHAPTER ONE / THE EMPOWERMENT APPROACH
CHAPTER 1 / THE EMPOWERMENT APPROACH................................ 1.
You are not alone.................................................................................................. 3
Gaining control..................................................................................................... 3
10 actions you can take......................................................................................... 4
1
The Empowerment Approach
Everyone’s experience with a brain tumor is different – yet a similar sense of fear
is felt by anyone who receives a diagnosis. Many people learn to manage the
fear, insecurity and anger. You can take actions that give you more control over
the experience every step of the way. You can take an empowerment approach.
THINGS TO REMEMBER
††
††
††
It’s normal to feel scared, insecure, and
angry about a brain tumor diagnosis–
and it is possible to deal with these feelings.
You can take an empowerment approach
to gain a sense of control over this disease.
Consider the 10 Actions You Can Take
(See p. 4)
††
You are not alone.
††
No question is wrong to ask.
††
††
††
Take time to process the information
you’re given. You probably have enough
time to take a deep breath and think
about your next steps.
Talking openly can become a priority for
your family and with your doctors (see
Chapter 5 for tips).
Remember what’s important to you and
think about your goals and values. Aim to
enjoy the things that make your life special.
CHAPTER 1 / THE EMPOWERMENT APPROACH
1
Over the last ten years I was diagnosed with five hemangiopericytoma
tumors. I have had one craniotomy and three Gamma Knife surgeries.
Since my first surgery I’ve hiked to the top of Mt. Whitney and Half
Dome, gone white water rafting and hang gliding, learned to rock
climb and ride a motorcycle, got married, and had a beautiful son
that I never thought I could have. I am not sure what the future has
in store for me, but I will not give up!
— Tiffany (from the National Brain Tumor Society’s Story Corner)
Being empowered is about choosing to
The Patient Empowerment Concept
adopt a series of actions, behaviors, and
states: People who actively participate
attitudes that can help improve your
in their fight for recovery along with
quality of life.
their health care team will improve the
quality of their life and may enhance the
possibility of their recovery.
2
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
BE EMPOWERED
•
Access resources for practical
information and support
•
Partner with your doctor through
good communication
•
Make active choices in your
treatment
•
Make changes in your life that
are important to you
Don’t let this disease off the hook
without a major fight.
— Richard (from the National Brain Tumor
Society’s Story Corner)
YOU ARE NOT ALONE
GAINING CONTROL
When confronted with a brain tumor
Your involvement in the choices you
with your health care team to get answers
it is common for people to feel alone,
make with your medical team can make
to your questions. (Look for sample
confused, and fearful of the unknown.
a big difference in your experience and
questions throughout this book to help
This time is challenging, but can
your quality of life.
you frame your own questions.) You may
be managed. No one coping with a
brain tumor has to do it alone.
Regardless of your diagnosis, most people
This includes acknowledging your
physical, social, and emotional needs.
Most importantly, it includes partnering
(patients and caregivers alike) find it
helpful to talk about their situation and
sort through information with others
who have a personal experience with
brain tumors. You can talk to people
with experience through support groups,
counselors, online chat groups, or
organizations that offer over-the-phone
expert and practical support.
Throughout this book, especially in
Chapters 5-8, you will find information
about how to access services and trained
experts.
No one coping
with a brain tumor
has to do it alone.
feel more confident about what to do
next if you take part in making plans and
finding a network of people to help you.
10 Actions You Can Take
1. T
ake one day at a time, and make
one decision at a time. Try to resolve
only today’s problems. The future
is always unknown – for everyone.
Life with a brain tumor can feel
overwhelming but taking one small
step at a time can help.
4. Reach out to other brain tumor
survivors. It’s often comforting to
talk with others who can understand
what you’re experiencing, because
they’ve also been there. See p. 69
to find organizations that can help
you connect.
2. Partner with your health care team.
Having an honest relationship with
your medical team can help you feel
a greater sense of trust and control.
Consider a second or third opinion
from experts, ideally at a brain tumor
center. Carry a notebook with you or
ask someone to write down the things
you’d like to ask your doctor. Refer
back to your notebook to help you
remember what your doctor said.
5. Acknowledge and express your
feelings. Take time to listen to
yourself. Find ways to express your
feelings through journaling, physical
activity, or creative pursuits, or
consider talking to a social worker
or psychologist.
3. A
sk your family and friends to
help. Family and friends often want
to help but don’t know how. Offer
specific examples, such as: driving to
appointments, researching financial
support, making phone calls, or just
talking. Reach out to your nurse or
social worker to learn about available
support services when you need
extra help.
4
6. Establish a reasonable amount of
control over your life. Having a brain
tumor can make it difficult to feel in
charge of your life and your care. At
times you may feel too exhausted
or are unable to think clearly. Work
with your medical team to develop a
plan that gives you as much control
over your life as you can comfortably
handle.
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
7. Learn to relax. It can help to feel
calm. Try relaxation or meditation
programs to reduce stress. Relaxation
is something that you might have to
learn, or build it into your day, but it
is important.
8. M
ake healthy lifestyle choices. It’s
never too late to make changes that
will improve your well-being. Every
small step you take to eat better, get
more exercise, and find more humor
in life can make you feel better.
9. F
ind a new perspective. A brain
tumor diagnosis is life changing. It can
be difficult, but also an opportunity
to reprioritize goals and reframe your
self-image.
10. You can find hope in many things.
When you find something that
gives you hope, you may feel better
equipped to handle challenges. Draw
upon family connections, cultural
customs, and spiritual beliefs. If a cure
is unlikely, one can always hope for
small things that make each new day
better in some way.
— Archie, patient
Understanding Brain Tumors
C H A P T E R T W O / U N D E R S TA N D I N G B R A I N T U M O R S
Be patient. Give yourself
time to absorb what’s
happening… and don’t
immediately dive into
the internet.
C H A P T E R T W O / U N D E R S TA N D I N G B R A I N T U M O R S
C H A P T E R 2 / U N D E R S TA N D I N G B R A I N T U M O R S . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
What is a brain tumor?.......................................................................................... 7
Defining brain tumors........................................................................................... 7
Diagnosing a brain tumor..................................................................................... 9
Scans and imaging techniques........................................................................... 10
Tumor grading.. ................................................................................................... 11
Tumor types........................................................................................................ 12
Diagnostic surgery.............................................................................................. 13
Pathology report.. ................................................................................................ 13
The treatment team............................................................................................. 14
Specialists........................................................................................................... 15
2
Understanding Brain Tumors
The brain, its structure, and the role that each part plays in our everyday thoughts
and behaviors is remarkable. These are only some of the reasons why a tumor in the
brain is so complex.
††
THINGS TO REMEMBER
There are over 120 types of brain and
central nervous system tumors. When
diagnosed, it is important to understand:
††
1. The type and grade (how aggressive it is)
2. Whether it is a primary or a secondary
tumor
††
3. If it is cancerous (malignant) or not (benign)
4. Where in the brain the tumor is located
††
††
It helps to get a second or even third
opinion to confirm your diagnosis and
treatment plan.
Keep a list with phone numbers for all
of the doctors, specialists, nurses, etc.
on your team (collect business cards).
††
You can bring someone to doctors’
appointments to help you sort through
information, ask questions, remember
next steps, and keep notes.
Keep copies of your medical records,
current medication list, and diagnostic test
results. This can help you as you meet new
doctors and work with insurance.
Take one step at a time. You can learn
about your diagnosis, treatment options,
and what to expect after treatment, then
decide the best next-steps for you and
your family.
C H A P T E R 2 / U N D E R S TA N D I N G B R A I N T U M O R S 5
Brain and Spinal Cord
BRAIN STRUCTURES AND THEIR FUNCTIONS
Together, the brain and spinal cord (the
central nervous system (CNS)) control the
physiological and psychological functions
of our body. Generally our brain includes
three major parts:
•
The cerebrum controls thinking,
learning, problem solving, emotions,
speech, reading, writing, and voluntary
movement.
•
The cerebellum controls movement,
FRON TA L L OB E
• movement
• reasoning
• behavior
• memory
• decision making
• personality
• planning
• judgment
• initiative
• inhibition
• mood
PAR I ETAL LO BE
• telling right
from left
• calculations
• sensations
• reading
• writing
O C C I PI TAL
LO BE
• vision
balance, and posture.
•
The brain stem connects the brain
to the spinal cord, and controls
breathing, heart rate, and the nerves
and muscles that we use to see, hear,
walk, talk, and eat.
For more information about
the brain, view the National
Cancer Institute’s brain tumor PDQ,
www.cancer.gov/cancertopics/pdq/
treatment/adultbrain/Patient
TEMPORA L
L OB E
• language
comprehension
• behavior
• memory
• hearing
• emotions
PITU ITA RY
GL A N D
• hormones
• growth
• fertility
C ER EBELLUM
• balance
• coordination
• fine muscle
control
BR AI N STEM
• breathing
• blood pressure
• heartbeat
• swallowing
Based on an illustration from National Brain Tumor Society’s The Essential Guide to Brain Tumors
6
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
W H AT I S A B R A I N T U M O R ?
DEFINING BRAIN TUMORS
A brain tumor is an abnormal growth
Benign
spread to other areas of the body, they
of tissue in the brain or central spine
The least aggressive type of brain tumor
can spread throughout the brain or to the
that can disrupt proper brain function.
is often called a benign brain tumor.
spine. These tumors can be treated with
Doctors refer to a tumor based on where
They originate from cells within or
surgery, chemotherapy and radiation, but
the tumor cells began, and whether
surrounding the brain, do not contain
they may recur after treatment.
they are cancerous (malignant) or not
cancer cells, grow slowly, and typically
(benign).
have clear borders that do not spread
Primary
into other tissue. They may become quite
Whether cancerous or benign, tumors
All brain tumors can grow to damage
areas of normal brain tissue if left
untreated, which could be disabling and
possibly fatal.
large before causing any symptoms. If
these tumors can be removed entirely,
they tend not to return. Still, they can
cause significant neurological symptoms
Brain and spinal cord tumors are different
depending on their size, and location
for everyone. They form in different areas,
near other structures in the brain. Some
develop from different cell types, and may
benign tumors can progress to become
have different treatment options. In this
malignant.
primary brain tumors. Primary brain
tumors may spread to other parts of
the brain or to the spine, but rarely to
other organs.
Metastatic or Secondary
Metastatic or secondary brain tumors
book, we try to offer general guidance for
begin in another part of the body and
both low grade (benign) and high grade
Malignant
(malignant) primary brain tumors for
Malignant brain tumors contain cancer
adults.
that start in cells of the brain are called
cells and often do not have clear borders.
They are considered to be life-threatening
because they grow rapidly and invade
surrounding brain tissue. Although
malignant brain tumors very rarely
then spread to the brain. These tumors
are more common than primary brain
tumors and are named by the location in
which they begin. They are treated based
on where they originate, such as the lung,
breast, colon or skin.
C H A P T E R 2 / U N D E R S TA N D I N G B R A I N T U M O R S 7
FA C T S A B O U T B R A I N T U M O R S I N T H E U N I T E D S TAT E S
An estimated 688,000+
PEOPLE
in the U.S. are living with
a primary brain or central nervous system (CNS) tumor diagnosis:
PRIMARY BRAIN
TUMOR TYPES
138,000 WITH MALIGNANT TUMORS
550,000 WITH BENIGN TUMORS
APPROXIMATELY
20-40%
OF ALL OTHER CANCERS LATER
DEVELOP A BRAIN METASTASES
IN 2012, NEW PRIMARY BRAIN TUMOR
DIAGNOSES INCLUDED:
63%
B E NI G N
TUM ORS
(41,980 Cases)
37%
This accounts for 98,000 to 170,000 new
metastatic brain tumor cases each year.
M AL I G NAN T
TUM ORS
16%
7%
35%
14%
9%
2%
33%
Glioblastoma
Astrocytoma
Meningioma
Pituitary
Nerve Sheath
Lymphoma
Other
(Ependymoma,
Ogliodendroglimoa,
Embryonal, etc.)
(24,300 Cases)
Source: CBTRUS Statistical Report (2012)
8
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
DIAGNOSING A BRAIN TUMOR
What a crazy ride this has been. I went to bed after watching a
movie and woke up in an ambulance on the way to the hospital.
I didn’t know my name, didn’t recognize my wife or kids and
couldn’t understand why I was in the back of this ambulance.
— Mike (from the National Brain Tumor Society’s Story Corner)
Some people may have symptoms that
Neurological Examination
suggest there is a brain tumor, others
As part of the diagnostic testing, a doctor
have no obvious symptoms.
will measure nervous system functions,
Commonly, people experience longterm headaches, seizures or convulsions,
difficulty thinking and speaking/finding
words, personality changes, tingling or
physical and mental alertness, and
include the examination of normal brain
functions from reflexes to judgment,
smell and taste.
stiffness in one side of the body, a loss of
If responses are not normal, a brain
balance, vision changes, nausea, and/or
scan will be ordered, or a patient will be
disorientation (see Chapter 4).
referred to a neurologist or neurosurgical
If these symptoms are occurring, a doctor
oncologist for more tests.
will ask questions about a person’s
medical history and overall health, and
prescribe a variety of diagnostic tests
to determine what is causing these
problems, and then seek remedies.
C H A P T E R 2 / U N D E R S TA N D I N G B R A I N T U M O R S 9
SCANS AND IMAGING TECHNIQUES
Magnetic Resonance Spectroscopy
tissue. PET is also used during brain
tumor is present, and to locate exactly where
(MRI Spect or MRS), measures the
mapping procedures.
it is growing. A scan creates computerized
levels of metabolites in the body. An
images of the brain and spinal cord by
MRS can detect irregular patterns
puncture), uses a special needle
examining it from different angles. Some
of activity to help diagnose the type
placed into the lower back to measure
scans use a contrast agent (or a dye) to
of tumor, evaluate its response to
pressure in the spinal canal and brain
allow the doctor to see the difference
therapies, or determine aggressiveness
and determine if there is an infection
between normal and abnormal tissue.
of a tumor.
or tumor cells.
A scan is the first step to identify if a brain
A patient may need more than one type
•
•
•
Spinal tap (also called a lumbar
Perfusion MRI examines the flow of
of scan to diagnose a tumor, depending
blood into the tissues to help assess
Things to Know about Scans
on its type and location.
the grade/aggressiveness of tumors
Ask your neurosurgeon or nurse what
and differentiate a recurrent tumor
you have to do for a scan, where to go
from dead tumor tissue.
and how the scan works, so you can feel
Commonly used scanning and imaging
techniques:
•
•
Functional MRI (fMRI) tracks the
prepared. Keep a record of your scan
Computed Axial Tomography (CAT
use of oxygen and blood flow in
and x-ray history. This information can
or CT Scan) is a computerized x-ray that
the brain as patients perform tasks.
help doctors make informed treatment
can show a combination of soft tissue,
An fMRI can identify the motor,
decisions and minimize your over-
bone, and blood vessels. This is often
sensory, visual and language centers
exposure to radiation.
the first test a person will receive in an
of the brain which helps your doctor
emergency room (i.e. after a seizure).
carefully plan for surgery.
Magnetic Resonance Imaging (MRI)
•
Be prepared to receive multiple scans
over time: first to detect the tumor; then
Positron Emission Tomography
can create clear and detailed three-
to observe the site after surgery; later,
(PET) scan uses a radioactive
dimensional images of a brain tumor. An
with follow-up care, to see if the tumor
substance to visualize hypermetabolic
MRI is not often used with people who
returns.
activity such as with malignant cells,
have a pace maker or other metal device.
or abnormalities from a tumor or scar
10
•
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
TUMOR GRADING
The World Health Organization (WHO)
Grade I Tumor
has created a standard by which all
•
Slow-growing cells
•
Almost normal appearance under a
tumors are classified. There are over
120 brain tumor classifications defined
by the WHO, based on the tumor cell
Grade IV Tumor
•
microscope
rapidly
•
Very abnormal appearance under a
microscope
•
Usually not cancer
complex diagnosis. Tumors are given a
•
Associated with long-term survival
name based on the cells where they arise,
•
Can potentially be cured with surgery
type and location, making this a very
Abnormal cells which reproduce
•
rapid growth
•
and a number ranging from 1–4, usually
Form new blood vessels to maintain
Areas of dead cells (necrosis) in center
represented by Roman numerals I-IV.
Grade II Tumor
This number is called the “grade” and it
•
Relatively slow-growing cells
•
Slightly abnormal appearance under
determines the grade for the entire tumor
a microscope
(even if most of the tumor is a lower
•
Can invade adjacent normal tissue
grade). Some tumors can change the way
•
Can recur as a higher grade tumor
they grow and may become malignant
represents how fast the cells can grow
and are likely to spread. This is critical
information for planning treatment and
predicting outcomes.
Lower grade tumors (grades I & II)
are not very aggressive and are usually
associated with long-term survival.
Higher grade tumors (grade III & IV)
treat. These are considered malignant
or cancerous.
cells; however, the most malignant cell
over time. Your doctor can tell you if your
tumor might have this potential.
Grade III Tumor
•
Actively reproducing abnormal cells
•
Abnormal appearance under a
grow more quickly, can cause more
damage, and are often more difficult to
Tumors can contain several grades of
microscope
•
Infiltrate adjacent normal brain tissue
•
Tumor tends to recur, often as a
higher grade
C H A P T E R 2 / U N D E R S TA N D I N G B R A I N T U M O R S 11
Tumor Types
With over 120 tumor types, it’s challenging to diagnose and treat brain tumors. The most common primary tumor types found in adults are:
GLIOMAS
MENINGIOMAS
Gliomas begin from glial cells found in the
supportive tissue of the brain. There are
several types of gliomas, categorized by
where they are found, and where the
tumor begins.
Meningiomas are usually slow-growing,
benign tumors that come from the outer
coverings of the brain just under the skull.
This type of tumor accounts for about one
third of brain tumors in adults. They may
exist for many years before being detected
and are commonly found in the cerebral
hemispheres just under the skull.
The following are gliomas:
•
•
12
Astrocytomas begin in the supporting
tissue cells (astrocytes). In adults, they
are most commonly found in the
cerebrum where they cause pressure,
seizures and personality changes.
Astrocytomas are generally subdivided
into low (grade I & II) or high grade
(grade III & IV). High grade (grade IV)
are the most malignant of all brain
tumors, known as glioblastoma.
Oligodendrogliomas also start
in the supporting cells of the
brain, often found in the cerebral
hemispheres (cerebrum), causing
seizures, headaches, weakness,
sleepiness, or changes in behavior.
Oligodendrogliomas tend to respond
better to therapies and have a better
prognosis than most other gliomas.
They are grade II or III.
SCHWANNOMAS
Schwannomas are usually benign tumors
that arise from the supporting nerve cells
called vestibular schwannomas or acoustic
neuromas. Vestibular schwannomas often
cause hearing loss, or problems with
balance or weakness on one side of the
face. Surgery can be difficult because
of where they are located. Sometimes
radiation (or a combination of surgery and
radiation) is used to treat these tumors.
PITUITARY TUMORS
The pituitary gland is located at the base
of the brain and it produces hormones
that control other glands in the body;
specifically the thyroid, adrenal glands,
ovaries and testes, glands for milk
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
production in pregnant women, and the
kidneys. Tumors in or around the pituitary
gland can lead to problems with how
these glands function. Also, patients may
have vision problems. Pituitary tumors are
frequently benign, and surgical removal
is often the cure. Some are treated with
medication to shrink or stop the tumor
from growing.
CENTRAL NERVOUS SYSTEM
(CNS) LYMPHOMA
CNS Lymphoma is a malignant primary
brain tumor that originates from the
lymphocytes found in the brain, spinal
cord, or eyes. It typically remains confined
to the CNS. Treatment commonly includes
chemotherapy and/or radiation.
For more information, visit the
National Cancer Institute’s
website (www.cancer.gov); the
National Brain Tumor Society’s
website (www.braintumor.org); the
American Brain Tumor Association’s
website (www.abta.org)
D I A G N O S T I C S U R G E RY
Surgery
PAT H O L O G Y R E P O R T
Biopsy. A surgical procedure to
A pathology report contains the analysis
Surgery is used to diagnose and treat
remove a small sample of tissue from
of brain tissue taken from a biopsy.
brain tumors. Ideally, the brain surgeon
the tumor so the cells can be examined
Sometimes the pathologist can’t make an
(neurosurgeon) can completely remove a
under a microscope.
exact diagnosis, so the tissue may be sent
brain tumor with surgery. If complete
removal is not possible, the surgeon will
•
There are two kinds of biopsy procedures:
––
remove as much as possible (called a
resection or debulking) without
negatively affecting the brain’s neurologic
functions. If a resection is not possible,
then a biopsy will be done (removing a
small piece of tumor tissue) to diagnose
the tumor type and grade so treatment
recommendations can be made.
•
to another pathologist for a second opinion.
Open Biopsy: done during a
craniotomy.
––
Closed Biopsy (also called
stereotactic or needle biopsy):
when a needle is used to access and
remove a small selection of tumor
tissue from an area that is difficult
to reach.
Craniotomy. A surgical procedure that
involves removing a piece of the skull
to access the brain. After the tumor
is resected and tested, the bone is
usually put back and held in place with
plates and screws. All tissue obtained
during the procedure is evaluated by a
pathologist, the doctor who examines
the tissue to identify the tumor type
and grade.
The day I was told I had a 4.3 cm tumor in my head it was as if
someone tossed a hundred lead blankets on top of me. After it
was removed, and the diagnosis was anaplastic ependymoma
grade III, that’s when it rained boulders. But I’m still here.
— Mark (from the National Brain Tumor Society’s Story Corner)
C H A P T E R 2 / U N D E R S TA N D I N G B R A I N T U M O R S 13
T H E T R E AT M E N T T E A M
It’s likely that you will work with a large
TO PARTNER WITH
YOUR TREATMENT TEAM
team of medical professionals for
treatment. Keep in mind that you can be
in charge of this process – and you can
•
Be involved in decisions.
aim to like and trust the doctors you work
•
Learn about your diagnosis and your
treatment options by asking as many
questions as you need to, and by
learning how to access resources
that may be helpful.
•
Talk to your treatment team about
your worries and concerns.
•
Try to keep all medical appointments
and be on time.
•
Know how to contact your treatment
team between appointments, so you
can ask questions that need quick
answers.
•
Ask for access to your medical
records: either get copies or access
your electronic file. This can help
when you meet a new specialist or
if you’d like another opinion.
with. You have time to find a good team.
A very special patient of
mine once told me “Feed
your faith and your fears
will starve to death.”
— Deanna Glass-Macenka, nurse
Specialists
NEUROLOGIST
A doctor specializing in disorders and
diseases affecting the brain and spinal cord
(the central nervous system or CNS). Some
neurologists have oncology training.
It is ideal to find a neurosurgeon
with experience. Ask if at least:
50%
NEURO-ONCOLOGIST
An oncologist (cancer doctor) specializing
in the treatment of cancers and tumors
affecting the CNS.
NEUROSURGEON (IDEALLY A
NEUROSURGICAL ONCOLOGIST)
A surgeon specializing in the surgical
management of CNS disorders. If possible,
talk to a neurosurgeon who works with
brain tumor patients 50% of the time,
or more.
NEURO-RADIOLOGIST
A radiologist (an expert in imaging
techniques) specializing in the
interpretation of scans and images of the
CNS. Some are specialists in brain tumors.
NEURO-PATHOLOGIST
A doctor specializing in the diagnosis
of CNS disorders through microscopic
examination of biopsied tissues (tumor cells).
OF T H E I R P RACT I CE
I S WI T H BRAI N
T UM OR PAT I E NT S
NEURO-ONCOLOGY NURSE
CLINICAL PSYCHOLOGIST
A registered nurse specializing in
patient education (including symptom
management) and support services for
brain tumor patients.
A licensed professional who can help
patients and families adjust to the
effects of illness on their lives. Neuropsychologists specialize in brain functions
and how brain damage can affect a
person’s abilities.
At any point before, during or after
treatment, the services of the following
professionals can be valuable:
SOCIAL WORKER
Medical social workers specialize in
counseling and crisis intervention, and help
locate appropriate care, legal resources,
and financial aid.
REGISTERED DIETICIAN OR
N UTRITIONIST
A trained specialist with knowledge about
how a person’s diet and daily nutrition
will impact their health. The Academy of
Nutrition and Dietetics lists professionals
with oncology experience:
www.eatright.org/programs/rdfinder
C H A P T E R 2 / U N D E R S TA N D I N G B R A I N T U M O R S 15
W HAT A G I FT!
— Dolores (from the National Brain Tumor Society’s
Story Corner)
I know that it sounds crazy, but if I hadn’t been blessed with
a brain tumor, I would not know the things that I know today.
I would not have the courage to live every day as if it were my
last. I now know what really matters in life. Today is a gift, and that
is why it is called the present! I have so much to be grateful for but I
never realized it before, until it was almost taken away from me.
My journey began in the summer of 2008, after months of enduring
excruciating pain in my head and finally deciding to go to the doctor. On
April 13, 2009, I was diagnosed with a meningioma tumor the size of a
baseball that was located behind my left ear. I was stunned, this was the last
thing that I expected and all I could think of was…”How was I ever going to
fit this into my busy schedule?” This is the kind of diagnosis that allows fear
to set in no matter how strong one thinks they are.
Thus, my search began to find my purpose in life, to discover my inner self,
and to further understand that everything happens for a reason. Since then,
I no longer fear death. Fear of death causes fear of life. Where once I lived
my life going 100 mph each day, stressed out and angry, I have now found
an inner peace that I have never known before. Now I pray for the wisdom
and inspiration to help others find the peace I feel.
16
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
— Darren, patient
Treatment Options
C H A P T E R T H R E E / T R E AT M E N T O P T I O N S
There are no clear
answers for me, so I had
to learn that emotionally
and medically, my brain
tumor care is something
we’d have to manage for
a long time. That’s why
it was so important for
me, us, to interview and
find the best doctors
for us.
C H A P T E R T H R E E / T R E AT M E N T O P T I O N S
C H A P T E R 3 / T R E AT M E N T O P T I O N S.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 7
Empowered communication............................................................................... 18
Basic treatments & medications used for brain tumors..................................... 19
Treatment for low grade tumors......................................................................... 21
Treatment planning for high grade tumors........................................................ 21
Treatment questions........................................................................................... 22
More treatment options for high grade tumors.................................................. 23
Treatment after recurrence................................................................................. 28
Long-term planning............................................................................................ 29
Managing late effects.......................................................................................... 30
Hospice............................................................................................................... 30
3
Treatment Options
Once you have a medical team in place, talk to them about your questions, fears, and concerns. You
and your loved ones are the only people who know everything about your care and what you need. It’s
critical to speak up and learn about all of your treatment options before you decide what care you need.
††
††
††
††
THINGS TO REMEMBER
Talk openly and honestly with your medical
team. It may seem difficult, but it will help
you get better care.
Keep a notebook and schedule planner to
track daily questions, side effects, notes,
and appointment information.
Learn about your treatment options over
the short and long term.
All questions are valuable.
_
Ask about the risks and benefits of each
treatment option presented.
_
Ask about what to expect at the time of
treatment, just after treatment, over the
course of recovery, and in the long-term.
††
_
Ask about clinical trials. This is the only
way to access some promising new
treatments.
_
Ask about how to maintain a high quality
of life over time.
_
Ask about palliative care or other options
to help manage your symptoms.
If you feel overwhelmed: contact the Cancer
Support Community’s “Open to Options”
treatment decision counseling program.
(See p. 27)
C H A P T E R 3 / T R E AT M E N T O P T I O N S 17
E M P O W E R E D C O M M U N I C AT I O N
To talk more effectively with your health
time with the nurse? Ask these types
care team:
of questions up-front so you and your
1. Keep a notebook. A notebook can
help you keep track of questions and
issues that you’d like to discuss at
doctor can maintain a productive
relationship.
3. Bring someone with you to
appointments. If you’re not feeling
appointments. It is hard to manage
well enough to write everything down,
all of the information and emotions. A
ask someone to help. This notebook
family member or friend can be very
can include:
helpful as an extra set of ears, to help
a.Questions
b.Side effects or symptom tracking
c.Supplements
d.Other medications
take notes, and to discuss what you
1. What is the goal of treatment for me?
2. What are my treatment options?
3. Am I eligible for any clinical trialand when? What is the goal of the
trial(s)?
4. What are the possible side effects of
each treatment option?
heard or remember things you might
5. What can I do to prepare for
treatment?
forget.
6. What will my recovery look like?
4. Use a schedule-planner to organize
e.Your “to do” list
help. In addition to a regular calendar,
2. Know how to get your questions
www.rci.lotsahelpinghands.com or
consider an online resource (like
answered. Will there be enough
www.mylifeline.org) to help you stay
time during appointments to talk
organized and recruit help when you
through your questions? Is email
need it. You can plan for things like a
better? Do you need to schedule an
ride to medical appointments, or help
extra appointment just to talk through
with dinner or childcare.
everything? Is it better to schedule a
18
QUESTIONS ABOUT
TREATMENT OPTIONS
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
7. What is the likelihood this tumor will
return after treatment?
8. What additional treatments might
I need?
9. Will I need rehabilitation services,
like speech therapy or physical
therapy?
10.How can I reach you if I have
questions after today?
11.Who would you recommend that I
see for a second opinion?
B A S I C T R E AT M E N T S & M E D I C AT I O N S U S E D F O R B R A I N T U M O R S
WHEN TO CONSIDER
A SECOND OPINION
•
•
•
•
If you feel uncertain about your initial
diagnosis, recurrence, or response to
treatment.
If you wish to have access to
additional experts in the treatment of
brain tumors, or wish to have access
to clinical trials.
If you feel that your physician is
limiting your treatment options
or has told you that no further
treatment can help you – but you
want more information or believe
there may be other options.
Treatment for brain tumors is based on:
•
the brain from cerebrospinal fluid. If
history
removing all or part of the tumor cannot
The type, location, and size of the tumor
•
How likely the tumor is to spread
or recur
•
Hydrocephalus – causes pressure in
Your age, overall health, and medical
•
•
•
resolve this problem, a shunt to re-direct
the path of fluid may be required.
•
Other common symptoms – can
include muscle weakness, or changes
Your tolerance for specific
in sensation, cognitive functions, and
medications, procedures, or therapies
personality.
Your opinion or preference
Treatment for these symptoms may include:
The first step is to address symptoms:
•
If you just want to be sure that you’re
on the right course.
•
•
Seizures – range from visual problems,
Antiseizure/Antiepileptic Drugs
(AEDs)
to sensations such as numbness or
Antiseizure drugs treat and prevent
tingling, to feelings of being disconnected
seizures associated with pressure in
and unable to speak, to uncontrollable
the brain from a tumor, from surgery, or
body movements. (See p. 36).
from an irritating treatment. In general,
Brain tissue swelling /edema –
AEDs are recommended around the
causes problems like memory loss,
time of surgery, or for a longer period of
personality change, confusion, speech
time for people with a history of seizures.
problems, visual problems, muscle
Some people experience sleepiness,
weakness, sensory alterations, and
unsteadiness, or confusion when taking
decreased levels of consciousness.
AEDs. If a rash occurs, your doctor must
Headaches – are very common.
be contacted immediately and AED use
must stop.
C H A P T E R 3 / T R E AT M E N T O P T I O N S 19
Steroids
Surgery
Steroids are used to treat and prevent
The ultimate goal of surgery is to remove
swelling and pressure in the brain. They
as much of the brain tumor as possible.
are very helpful, but they also cause side
Removing the tumor often relieves the
effects such as weight gain, “moon face,”
symptoms caused by it. Surgery is only
mood changes, difficulty sleeping, muscle
possible if the tumor is in a location
weakness, osteoporosis, or joint pain,
that can be reached without damaging
increased risk for infections and bruising,
important brain functions. It is critical to
an increase in blood sugar, and possibly
balance the possible impacts of surgery
gastrointestinal bleeding. It is important
with the benefits.
to take steroids to reduce swelling, but it
is equally important to manage their side
effects. If you experience these types of
side effects, talk with your doctor or nurse
so they can help you with strategies for
relief, including changes to the dose and
type of steroid used. This can take some
time. (More in Chapter 4)
Sophisticated neurosurgical navigation
equipment is used in nearly all brain
surgery centers to map around the brain
to the tumor. The best comparison is like
a GPS map for the brain. Brain mapping
for surgery involves a special scan that is
synchronized with operating equipment
before surgery so the surgeon can identify
abnormal brain tissue and provide the
most complete and safest surgery possible.
20
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
SOME PLACES TO
CONTACT FOR REFERRALS
•
You can ask your primary
physician to recommend a
neuro-oncology expert
•
The National Brain Tumor
Society website can provide
links to information and locations
of treatment facilities near you.
1-800-934-2873 or
www.braintumor.org
•
The National Cancer Institute
can locate a Comprehensive
Cancer Center near you. 1-800422-6237 or www.cancer.gov/
researchandfunding/extramural/
cancercenters
T R E AT M E N T F O R L O W
GRADE TUMORS
T R E AT M E N T P L A N N I N G F O R
HIGH GRADE TUMORS
Often, low grade tumors (grade I and
Higher-grade tumors are more difficult
II) are treated with watchful monitoring
to remove and require additional
or surgery alone. Though all tumors are
treatments beyond surgery, such as
monitored with repeat scans, grade II
radiation, chemotherapy, or a clinical
tumors are watched more closely after
trial if one is available. Microscopic tumor
surgery and over time to make sure there
cells can remain after surgery and will
is no recurrence.
eventually grow back. All treatments,
Try to talk openly about how you’re doing
with your family, close friends, and your
therefore, are intended to prolong and
improve life for as long as possible.
employer so that you can make plans
Try to ask straight-forward questions that
with them as you strive to return to more
consider your quality of life during and
regular routines and responsibilities.
after treatment. There may not be clear
The doctor didn’t
speak plainly to
us. I think it’s
important to learn
as much as you can
about what to expect over time,
so you can feel more prepared.
— Candice, caregiver
answers, but it’s important to ask your
questions anyway.
BOOK RECOMMENDATIONS
FOR MORE INFORMATION
Johns Hopkins Patient’s Guide to
Brain Cancer by Deanna GlassMacenka and Alessandro Olivi
Navigating Life with a Brain Tumor
by Lynne P. Taylor, Alyx B. Porter
Umphrey and Diane Richard
C H A P T E R 3 / T R E AT M E N T O P T I O N S 21
Treatment Questions
TREATMENT QUESTIONS
FOR ALL BRAIN TUMORS
1. What are the risks and benefits of
surgery for me?
2. What can I do to manage symptoms
or side effects?
3. Will my symptoms go away?
4. Will I experience different symptoms
or cognitive problems after surgery?
5. Where and how big will the incision
be? Will you have to shave my head?
6. How long will I be hospitalized after
surgery?
7. Who will be involved with care for my
recovery? How long?
8. Will I need rehabilitative care such
as speech, physical, or occupational
therapy? How long?
9. Will I have to see a neuro-oncologist
for chemotherapy or radiation
oncologist for radiation therapy?
10.Who is responsible for my follow-up care?
11.Do you anticipate a recurrence of this
type of tumor?
TREATMENT QUESTIONS
FOR HIGH GRADE TUMORS
1. How can I tell the difference between
treatment side effects and brain
tumor symptoms?
2. What are the standard guidelines
to treat my tumor vs. what you
recommend? Why?
3. Can you recommend a clinical trial
for my care?
4. What will my life be like after
treatment?
5. What is the likelihood that radiation
and chemotherapy will help? What
are the pros and cons of my options?
6. If I decide not to undergo further
treatment, what will my progression
look like?
7. Can you recommend a social worker
or support group to help me and my
family cope with my future life?
8. What else can I do to improve my
quality of life, and the quality of life
of those who care for me?
12.Can I donate my tumor tissue to
research?
22
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
The National Comprehensive
Cancer Network (NCCN)
guidelines set the standard for
treating brain tumors. The way that
different institutions and physicians
approach treatment starts with these
guidelines, but may differ with
institutional or personal opinions. It is
worth looking at the NCCN guideline
for your tumor type as you consider
treatment opinions. www.nccn.org/
professionals/physician_gls/f_
guidelines.asp#cns
M O R E T R E AT M E N T O P T I O N S F O R H I G H G R A D E T U M O R S
Radiation Therapy
Side effects from radiation may include
Radiation therapy options:
When surgery is not enough, radiation
swelling, fatigue, headaches, nausea,
•
treat­ment uses x-rays and other forms of
possible hair loss, and changes in your
is the standard treatment used for all
radiation to destroy tumor cells, or delay
sensations or movement. Damage to
patients with high grade malignant
tumor growth. This can also be used
normal brain cells is often subtle, but
gliomas, typically given in an outpatient
when tumor cells are found in hard-to-
it can affect mental sharpness and
clinic. If you need help with trans­
reach areas.
the ability to think clearly. Cognitive
portation to a radiation appointment,
impairment can worsen to become a
you can ask if transportation benefits
long-term problem for some people.
are available through your hospital
oncologists try to avoid killing healthy
There are ways to reduce the side effects
or insurance.
cells, thereby reducing side effects. You
from radiation treatment, so as always, it
may wear a special mask that fits around
is important to tell your medical team how
your head to hold your head in place
you feel so they can help provide relief.
By planning treatment carefully with
brain mapping techniques, radiation
during radiation treatment.
For higher grade gliomas, radiation
treatment is often given with low daily
doses of chemotherapy (such as
temozolomide (Temodar®) to help
delay a recurrence and allow patients
to live longer.
I know now that I waited too long
before I got my headaches checked
out. Now I want to bring awareness
to this disease. I overcame my brain
tumor, and I want people to know
they can overcome it, too.
— Anthony, patient
External beam fractionated radiation
•
Stereotactic radiosurgery is a
nausea, fatigue, weight loss, and
lomustine (CCNU), or procarbazine
technique that focuses high doses
gastrointestinal problems. Patients are
(Matulane®). TMZ plus radiation is
of radiation at the tumor from many
monitored closely to manage problems
the standard treatment for high grade
different angles. This form of radiation,
that may occur.
gliomas. Some doctors treat anaplastic
often performed with the Gamma
Knife® unit or the newer CyberKnife®
unit, can be used to treat both benign
Chemotherapy is provided in three forms:
•
Chemotherapy wafers containing drug
vincristine, and CCNU (known as PVC
chemotherapy).
and malignant tumors, but is most
called carmustine or BCNU are
appropriate for tumors with well-
inserted directly into a high grade
Oral chemotherapy is not always effective
defined edges.
glioma during surgery. The wafer,
on brain tumors. This is because of the
named Gliadel , slowly dissolves over
body’s naturally protective system in
2-3 weeks to kill tumor cells.
the brain and cerebro-spinal fluid. This
Intravenous chemotherapy is when
protective mechanism is known as the
®
•
oligidendrogliomas with procarbazine,
Proton beam radiation therapy is a
type of high-energy, external radiation
therapy that kills tumor cells with little
•
damage to nearby tissues. It is most
the chemotherapy is given through a
blood-brain barrier and it prevents
appropriate for tumors located at the
vein, in a clinic setting. Examples for
harmful substances from entering the CNS.
base of the skull or behind the eyes.
high grade gliomas include: You can ask your doctors which
Chemotherapy
Chemotherapy is the use of drugs to kill
cells that rapidly divide, such as cancer
cells. It is prescribed when surgery is not
enough to remove a tumor – most often
for higher-grade tumors. Low doses may
reduce the impact of chemotherapyrelated side effects, such as hair loss,
24
•
––
Nitrosurea: BCNU
chemotherapy they think would be
––
Vinca alkaloids: vincristine
appropriate for your treatment and why.
––
Platinum Analogues: carboplatin,
You can also ask your insurance company
cisplatin
what drugs are covered. The decision of
Oral Chemotherapy is when
chemotherapy is given in a pill, by
mouth. Examples include: TMZ
or temozolomide (Temodar©),
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
whether or how much chemotherapy
you’d like to use is ultimately up to you.
Clinical Trials
Clinical Trial Phases:
Clinical trials are studies designed to test
•
Phase I: Determine maximum
QUESTIONS TO ASK
ABOUT CLINICAL TRIALS
the most promising new treatments.
tolerated dose…how much, how safe,
People participate in a clinical trial for
how often?
1. Do I qualify for any available clinical
trial(s)?
Phase II: Evaluate effectiveness…does
2. What is the purpose of the study?
a variety of reasons: to try a new and
•
promising treatment method, to
contribute to the development of future
treatments, or to help find a cure. Most
clinical trials require a patient to qualify
with certain medical criteria. Some trials
can be joined before your first surgery,
it do any good?
•
Phase III: Compares a new treatment
to the standard treatment to determine
which is more effective…is the new
treatment better?
others during radiation, others at the
point of recurrence. You can ask your
doctor if you are eligible for a trial, or get
a second opinion at any time.
Though participants may be among
the first people to benefit from a new
treatment, there can be unexpected side
effects, or the new treatment may not
be better than or even as effective as the
standard treatment. Patients are provided
with very clear information about the
treatment under investigation before they
decide to participate. If they do wish to
participate, they are monitored closely.
MORE ABOUT
CLINICAL TRIALS
National Brain Tumor Society’s
Clinical Trials Matching Service
1-877-769-4812
www.emergingmed.com/networks/NBTS
Cancer Support Community’s
Clinical Trials Matching Service
1-800-841-8927
www.cancersupportcommunity.org
search: Clinical Trials
National Cancer Institute
1-800-422-6237
www.cancer.gov/clinicaltrials
3. How do the possible risks and
benefits of the new treatment
compare with my other treatment
options?
4. Does the study sponsor pay for my
treatment in the clinical trial?
5. Will there be any travel, housing,
or childcare costs that I need to
consider while I’m in the trial?
6. If the new treatment has negative
effects, what will be done for me and
who will cover the cost?
7. When and where will the clinical
trial’s findings be reported?
8. If I use Gliadel, will it restrict me from
entering a trial?
9. Can I have a sample of my tumor
tissue frozen, so I can be a candidate
for a vaccine in the future, or genetic
tests?
C H A P T E R 3 / T R E AT M E N T O P T I O N S 25
Targeted Therapy
Electric Field Treatments
Targeted therapies focus on specific
Electric field treatments are a new
elements of a cell, such as molecules or
strategy to kill brain tumor cells, utilizing
pathways required for cancer cell growth
a device called NovoTTF™ (by Novicure),
(i.e., cell proteins) and use them as a
that is placed along the scalp. It provides
target. When a targeted therapy attaches
a mild electric current (electrodes)
itself to a designated protein in a cancer
that may stop the growth of tumor cells
cell, it can stop certain functions in the
without harming normal brain cells.
cell. For example:
There is some controversy about the
•
Bevacizumab (Avastin©) is an FDA
efficacy of this therapy.
approved targeted therapy that affects
a tumor’s ability to make new blood
Other promising treatments still in
vessels. It can be helpful for recurrent
development are:
glioblastomas in adults.
Vaccine Therapy
Other targeted and biologic therapies
continue to be tested in clinical trials.
Examples include tyrosine kinase inhibitor
(TKI) therapy and anti-vascular endothelial
growth factor (VEGF) therapy.
Vaccine therapy uses the patient’s
immune system to recognize and then
attack cancer cells. Substances made with
brain tissue or made in a laboratory are
used to boost, direct, or restore the body’s
natural defenses against cancer – similar
to the way a flu vaccine helps the body
fight the flu.
26
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
ADVANCES BEING MADE
IN BIOMARKER RESEARCH
Advances are being made in the area
of biomarker research, where specific
proteins (biomarkers) found in the
RNA and DNA of brain tumor cells
can be used for cancer detection
and treatment. Biomarker research
is a foundation for personalized
medicine and provides hope for cancer
cures. Research is ongoing and very
promising, but more time is needed.
When a patient donates tissue samples
for biomarker research, it helps bring
researchers one step closer to finding
a cure. To learn more about donating
tissue samples: www.cancer.gov/
cancertopics/factsheet/Information/
donating-tissue-research, or look
online for information about The
Cancer Genome Atlas project.
For information about innovative
new research and treatments, visit
Accelerate Brain Cancer Cure’s website
(www.abc2.org).
Immunostimulatory Molecules
IF YOU NEED HELP WITH
MAKING TREATMENT DECISIONS
Clinical trials are planned to begin in
2014 for the use of Ipilimumab in the
treatment of glioblastoma. Ipilimumab
(YervoyTM) is a monoclonal antibody
(a lab-made antibody used for targeted
therapy) that has been found to be
beneficial in the treatment of melanoma,
Open to OptionsTM is a free telephone or in-person counseling program provided
by trained professionals at the Cancer Support Community. It empowers you to:
•
Communicate your concerns clearly
•
Create a list of questions for your doctor or health care team that will help
you address your specific needs
•
Organize your questions for specialists to help you get the most helpful
answers from the right people
and is now being tested on glioblastoma.
It stimulates the immune system to help
destroy unwanted tumor cells.
Gene Therapy
It works! Patients who participated in this program:
•
Were less anxious about their medical appointments
•
Felt that their appointments went more smoothly
•
Felt better about the care decisions they made
Gene therapy uses engineered genes that
Open-to-OptionsTM
call: 1-888-793-9355
www.cancersupportcommunity.org
can selectively kill cancer cells, stop their
growth, or stimulate the immune system to
fight them. This is done with the intro­
duction of engineered genes that can enter
into cells for treatment because they affect
the way cancer cells behave. Gene therapy
can be introduced to cancer cells by
inserting them into viruses, stem cells,
liposomes, or other immune cells. Gene
therapy has been very promising in pre-​
clinical trials.
C H A P T E R 3 / T R E AT M E N T O P T I O N S 27
T R E AT M E N T A F T E R R E C U R R E N C E
If you are diagnosed with a recurrent
Most patients with high grade glioma
It’s also helpful to ask if you are eligible
brain tumor, you will want to consider
receive a lifetime dose of radiation
for a clinical trial and to learn how it may
how additional treatment can impact
shortly after diagnosis. It is important to
benefit you.
your quality of life. Options available
be aware of your risk to normal brain
for retreatment include surgery with
tissue if additional radiation treatment
or without chemotherapy wafers,
is offered. In rare cases, when a good
chemotherapy (intravenous or orally),
period of time has passed since initial
•
Good overall health
possibly radiation, and/or clinical trials.
treatment, special techniques, such as
•
A smaller amount of tumor present
stereotactic radiosurgery or brachytherapy,
•
A longer interval (i.e., more than
Supportive care is most helpful when
there is a cancer recurrence – regardless
of additional treatment. Supportive or
palliative care refers to strategies that ease
pain and other symptoms. (See p. 29)
may allow additional radiation to be
directed to the tumor safely. However,
there is no proof that these radiation
treatments improve survival or provide
any benefit to the patient compared to
supportive care alone.
If you are diagnosed with a recurrent
brain tumor, you may want to consider
how additional treatment can impact
your quality of life.
28
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
You may benefit from retreatment
if you have:
one year versus less than one year)
between your original treatment and
the recurrence
LONG-TERM PLANNING
I had brain surgery and the aftermath left me partially paralyzed.
I endured intense physical and occupational therapy. Being partially
paralyzed everyone thought dancing would be over for me, but I was
determined to start dancing again. Eight years later, I have regained
a sense of movement which was imperative. Dance is my life.
THE GOALS OF
PALLIATIVE CARE
•
To treat symptoms that impact a
person’s quality of life, such as pain,
nausea, insomnia, cognitive changes,
and other physical symptoms caused
by brain cancer or its treatment
•
To treat a patient’s emotional and
social needs, including symptoms
such as anxiety or helping with
difficult family relationships
•
To address a patient’s spiritual needs
or concerns
•
To address a patient’s practical
needs, such as transportation and
financial concerns
•
To provide support for the patient’s
family, friends, and caregivers
— Zazel-Chavah (from the National Brain Tumor Society’s Story Corner)
All brain tumor patients can develop a
•
Rehabilitation care for post-surgical
plan with their treatment team, not just
or other treatment to help you regain
for immediate treatment, but also for
lost motor skills and muscle strength.
recovery and long-term management.
Speech, physical, and occupational
This may include follow-up scans,
therapists may be involved in this aspect
follow-up treatment, rehabilitative care,
of care, based on rehabilitative needs.
psychiatric care, and/or estate planning.
•
Supportive care/Palliative care
Talk with family and your medical team
to minimize the side effects of the
about what you need.
tumor or treatment and provide
During and after treatment, all patients
maximum support for the caregiver.
can receive a plan for:
Palliative care maximizes quality (as
•
Continuous follow-up care to manage
recovery from treatment, to detect if the
tumor returns, and to manage late
effects of treatment. Your medical
well as quantity) of life for the patient
and those who care for them—not just
at the end of life but throughout the
course of disease.
team can tell you how often you should
receive follow-up care over time.
C H A P T E R 3 / T R E AT M E N T O P T I O N S 29
M A N A G I N G L AT E E F F E C T S
HOSPICE
Treatment, and managing a brain tumor,
High grade brain cancer typically
Hospice providers work together to
can feel like a long haul. “Late effects”
cannot be cured and deciding when to
support the caregiver, meet the patient
happen well after treatment is over, and
stop aggressive treatment is difficult.
and family’s needs, and significantly
they can vary for people based on age,
Caregivers don’t have to manage this
reduce suffering for everyone. Hospice
general health, tumor type, and location.
decision alone.
care doesn’t end when a patient dies –
Late effects to manage with help from
When a person is unlikely to live longer
your medical or palliative care team
than six months, hospice care is often
can include:
recommended. It involves the care of all
•
Physical disabilities
aspects of a patient and family’s needs,
•
Learning and cognitive disabilities
including the physical (i.e., pain relief ),
•
Behavioral changes and emotional issues
•
Hormonal problems including
diabetes and infertility
•
Damage to internal organs or other
body systems from treatment
members left behind, to aid in their
grieving and to help them get back on
their feet.
psychological, social, and spiritual
For more information about
hospice, go to www.hospicenet.org.
aspects of suffering. It does not typically
involve “heroic measures” to keep a
patient alive (for example, it may not
provide fluids or nutrition).
Hospice is about comfort. This care may
Your medical team has strategies to help.
be given at home, in a nursing home or
Palliative care options can also relieve
at a hospice facility. Usually multiple
discomfort and provide extra assistance
care providers are involved, including a
to families as they manage day-to-day
physician, registered nurse, nursing aide,
stressors. When a caregiver needs help,
a chaplain or religious leader, a social
sometimes family, friends, or paid
worker, and volunteers.
professionals can also step in (See
Chapter 4 and 7).
30
it remains as a service for the family
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
I appreciate knowing that I can
call someplace like the Cancer
Support Community’s hotline to
talk to someone – People around
you love you so much, but they
can’t fix it.
— Candice, caregiver
It is important to explore
what a patient hopes for.
other physical symptoms,
independence for as long
as possible, participating
in a family event or
gathering, making peace
in a troubled relationship,
dying with dignity? What
people hope for frequently
changes throughout life,
but rarely does anyone
stop hoping.
— Deanna Glass-Macenka, RN
Managing Common
Side Effects
CHAPTER FOUR / MANAGING COMMON SIDE EFFECTS
Is it: freedom from pain or
CHAPTER FOUR / MANAGING COMMON SIDE EFFECTS
CHAPTER 4 / MANAGING COMMON SIDE EFFECTS..................... 31
Location matters................................................................................................. 32
Learn what to expect after your treatment.......................................................... 34
Rehabilitating physical symptoms................................................................... 35
Headaches.. ...................................................................................................... 36
Seizures............................................................................................................ 36
Blood counts.................................................................................................... 38
Gastrointestinal (GI) problems........................................................................ 38
Fatigue.. ............................................................................................................ 39
Cognitive and behavioral changes................................................................... 40
Anxiety and depression. ................................................................................... 42
Hormonal changes, fertility and sexuality....................................................... 43
Complementary or alternative medicine (CAM)................................................ 44
4
Managing Common Side Effects
Not everyone experiences the same side effects, but this information is here to help if you
experience any of these more common problems. You can keep notes about how you feel
and work closely with your doctors and nurses to find the best ways to feel better.
††
††
††
††
THINGS TO REMEMBER
Your symptoms are linked to the location
of the tumor in your brain, and result from
your treatments.
There are ways to relieve symptoms and
side effects, but this process is not perfect
and it requires time and patience.
Rehabilitation specialists (physical, speech
and occupational therapists) can be terrific
help. Try to find a team that is experienced
in working with brain tumor patients.
Keep track of how you feel (or ask someone
to keep notes for you.) Aim to bring
your notes to appointments to help you
remember what you’d like to discuss.
††
††
††
††
Many cognitive symptoms (memory loss,
anger, anxiety or depression) not
only affect you, but also people close to you.
Try to be patient with yourself and with
others as you strive for a higher quality
of life.
Licensed social workers and support
groups can help as you cope with
depression, anxiety, or other changes
in your life. (See Chapter 5 for more.)
Complementary or alternative medical
techniques, such as diet changes, exercise,
or relaxation techniques, may also help you
feel better.
CHAPTER 4 / MANAGING COMMON SIDE EFFECTS
31
L O C AT I O N M AT T E R S
As a brain tumor grows, it presses on the
surrounding brain tissue, which affects
the function controlled by that part of the
LOCATION OF THE TUMOR
SYMPTOMS
Frontal lobe
•
•
brain. This chart shows symptoms that
•
can be caused by tumors in different parts
•
of the brain and the spinal cord.
•
•
•
•
•
Temporal lobe
•
•
•
Parietal lobe
Forgetting words
Short term memory loss
Seizures associated with strange
feelings, smells
•
Difficulty speaking or understanding
what is said to you
Problems with reading or writing
Loss of feeling in part of the body
Occipital lobe
•
Sight problems or loss of vision on one side
Hindbrain (cerebellum)
•
Poor coordination
Uncontrolled movement of the eyes
Nausea and vomiting
Neck stiffness
Dizziness
•
•
•
•
•
•
32
Changes in personality
Loss of inhibitions, behaving aggressively
Losing interest in life (apathy)
Difficulty with planning and organizing
Being irritable
Weakness in part of the face,
or on one side of the body
Difficulty walking
Loss of sense of smell
Problems with vision or speech
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
LOCATION OF THE TUMOR
SYMPTOMS
Brain stem
•
•
•
•
•
Spinal cord
•
•
•
•
•
Pituitary gland
•
•
•
•
•
•
•
•
Nerves controlling
sight or hearing
•
Meninges
•
•
•
•
•
Poor coordination
Drooping eyelid or mouth on one side
Difficulty swallowing
Difficulty speaking
Seeing double
Pain
Numbness in part of the body
Weakness in the legs or arms
Loss of control of the bladder or bowel
Difficulty walking
Irregular or infrequent periods
Infertility in men and women, impotence
Lack of energy
Weight gain
Mood swings
High blood pressure
Diabetes
Enlarged hands and feet
QUESTIONS TO ASK
ABOUT SIDE EFFECTS
1. What side effects should I expect?
2. When should I call you for immediate
help? (With which side effects?)
3. What can I do to manage my side
effects? Can you help me create a
management plan?
4. How do you recommend I keep track
of how I feel, and what do you need
to know?
5. What can I do to feel better?
Blurry vision
Hearing loss
Headache
Nausea and vomiting
Sight problems
Neck pain
Adapted from Cancer Research UK. www.cancerresearchuk.org
CHAPTER 4 / MANAGING COMMON SIDE EFFECTS
33
L E A R N W H AT T O E X P E C T A F T E R Y O U R T R E AT M E N T
After any surgery or cancer treatment,
it is not unusual to feel worse than you
You may experience dizzy spells or get
It was hard to see Archie’s heart break when he couldn’t
express himself. It was hard for me to receive text messages
that made no sense. Practice is critical. Archie is a published
author, but he had to relearn so much. I just wanted him
to be patient with himself. So he would practice, and say
words over and over again until he got it right.
confused about where you are and what’s
— Sarah, caregiver
did before. Though this is temporary, it
can be depressing. Brain surgery is a lot
for your body to cope with. Swelling in
the brain after an operation means it will
take some time before you feel the benefit
from having your tumor removed.
happening. These episodes can come
and go. This is normal and part of the
recovery period.
For some people, recovery may be
complete after a few weeks or months; for
others, you may have to learn to adjust
and manage permanent changes in your
life including not being able to work or
accomplish all of the tasks you did before.
Your surgeon can give you some idea,
but ask as many questions as you can
about what to expect for your recovery.
34
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
R E H A B I L I TAT I N G P H Y S I C A L S Y M P T O M S
Occupational therapists teach
It is also useful to know about the federal
physical symptoms including weakness,
patients how to manage their side
and state programs that link people with
difficulty speaking, stiffness, problems
effects so that they can go about their
services, technology, and funding. For
with movement, etc. can benefit from
lives and perform daily activities, such
example, the Americans with Disabilities
various forms of rehabilitative treatment.
as cooking, writing, and driving.
Act helps people who experience a
Speech therapists help people
disability due to illness, like a brain tumor,
People who experience a variety of
Every person with a brain tumor deserves
•
•
to function as optimally as possible,
overcome problems understanding
but want to go back to work with reasonable
so patients should be evaluated for
and producing language. Speech
accommodations. (Chapter 6 offers more
successful rehabilitation treatment.
therapists also help with eating and
information, or visit www.govbenefits.gov,
Physical, occupational, and speech thera­
swallowing caused when there are oral
or www.abledata.com.)
pists are experts in this area – and ideally,
motor problems. They teach patients
you can work with professionals who are
how to improve their speech process
experienced in working with brain tumor
and adjust how they verbalize or
patients and/or neurological dis­orders
otherwise express themselves.
(rather than sports injuries, for example):
•
Physical therapists help patients
If you need them, there are assistive
devices and exercises that can be
improve their walking, balance and
prescribed by rehabilitation specialists.
strength. Some people experience
Handrails and grab bars, and bath or
permanent mobility problems.
shower chairs are some. There are also
Physical or occupational therapists
tools and tips to help with eating and
will offer exercises to support your
dressing, and to help a person maintain
range of motion and make sure your
computer access and independence.
body has proper positioning to help
Keeping track of issues and talking
decrease pain and freezing of the
regularly with rehabilitation specialists
limb(s) as much as possible.
can help you get the support you need.
QUESTIONS ABOUT
REHABILITATION SERVICES
1. How long do you estimate that I will
need rehabilitation services?
2. Do I have insurance benefits for
rehabilitation? If so, what will it
cover?
3. If I haven’t met my rehabilitation
goals before my insurance benefit
runs out, how will that be handled?
CHAPTER 4 / MANAGING COMMON SIDE EFFECTS
35
HEADACHES
SEIZURES
Headaches are most often caused by
A seizure is a sudden attack or convulsion
edema (swelling of the brain caused
caused by an abnormal burst of electrical
involuntary jerking, tingling or
by the tumor or treatment). Steroids
activity in the brain. It can cause a range
numbness in one part of the body,
may be prescribed to reduce edema.
of reactions, from muscle contractions, to
buzzing in the ears, lip smacking,
Unfortunately, steroids can cause their
staring, to loss of consciousness.
and dilated pupils.
own set of problems (difficulty sleeping,
sweating, over-eating, agitation). If you
take steroids, be clear with your medical
team and tell them if you experience
sleeplessness or other new symptoms
so they can adjust the dose.
Some people only experience one seizure
•
•
Simple Partial Seizures can cause
Complex Partial Seizures cause
while others suffer from reoccurring
altered consciousness. A patient may
seizures, or epilepsy. Seizures are common
be aware of his or her surroundings
with slow-growing gliomas, meningiomas,
but unable to speak, or may feel
and metastatic brain tumors.
confused and hallucinate (imagining
Some headaches are connected with
sights, odors, and sounds).
•
Generalized Seizures are also
symptoms such as dizziness, nausea, or
called grand mal seizures. They
vomiting, often because of where the
begin with a sudden loss of physical
tumor is located in the brain. The surgical
control with flailing arms and legs,
removal of the tumor will often relieve
unconsciousness, twitching muscles,
those headaches; and post-operative
and incontinence, or shallow
headaches often go away after a short
breathing. Afterward, the patient may
period of time.
be limp or confused.
If headaches persist, you should be
evaluated. If headaches return, it could
be a sign of recurrent edema or a new
tumor and should be addressed by your
treatment team.
36
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
Patients who suffer from multiple
Some AEDs react badly with certain
seizures can keep a journal of when and
chemotherapy drugs and should not
for how long the seizures occur. The
be used together. If side effects are a
doctor can then find a pattern and adjust
serious problem, a doctor can change
antiepileptic drugs to help.
the medication.
A patient may be put on an antiepileptic
If you are aware of AED medications,
or antiseizure drug if he or she
or other medications that you should
experiences a seizure or to prevent
not take or react badly to, it is helpful
seizures. The type and amount of
to consider wearing a medical alert
medication is based on the level of
bracelet with this information.
seizure control needed and how well you
react to the medication.
HELPING SOMEONE WHEN
THEY HAVE A SEIZURE
If someone is experiencing a seizure,
stay with them and allow the seizure to
pass. This can take a few seconds to a
few minutes. Loosen any tight clothing
if possible, and make sure they are
breathing. Try to remove or cushion
harmful objects to prevent injury, and
do not put anything in their mouth.
Call for emergency help if the seizure
lasts longer than five minutes, if a
second seizure immediately follows,
or if the person has trouble breathing
or is injured.
Patients who suffer from multiple seizures can
keep a journal of when and for how long the
seizures occur. The doctor can then find a
pattern and adjust antiepileptic drugs to help.
CHAPTER 4 / MANAGING COMMON SIDE EFFECTS
37
GASTROINTESTINAL (GI)
PROBLEMS
BLOOD COUNTS
Anemia is when red blood cell (RBCs)
bleeding. If thrombocytopenia becomes
GI problems can include any difficulty
levels are unusually low. RBCs are
too severe, platelet transfusions may be
with digestion or stomach discomfort.
important because they contain
necessary.
Chemo­therapy is well known for causing
hemoglobin which allows the oxygen
exchange to occur as blood circulates
through our bodies. Low RBC levels lead
to fatigue or symptoms like dizziness, or
shortness of breath. If anemia becomes
severe, it can be treated with medications
or with a blood transfusion.
Thrombosis is the formation of blood
clots as a result of increased clotting
factors in the blood. With deep vein
and disrupt the flow of blood, causing
pain or swelling in the calf, behind the
knee, or in the thigh. If blood clots break
loose and block blood vessels in the
(WBCs) are unusually low. WBCs are
lung, it is called pulmonary embolus
important because they help to fight
(PE), which requires immediate medical
infection. Chemotherapy can affect your
attention. DVT and PE may occur at any
ability to maintain adequate amounts of
time after brain tumor surgery, especially
WBCs. Steroids can also lower certain
when a patient is not physically active.
WBCs, called lymphocytes. Your doctor may
Patients and caregivers need to be aware
prescribe antibiotics to help protect you.
of DVT symptoms and call the doctor
immediately if they have concerns.
thrombocytes or platelets is unusually
Staying active and walking as much as
low. Platelets are important for our blood
possible is the best way to prevent DVT.
to clot. Chemotherapy can decrease the
Compression stockings and medication
production of these cells, and when they
to thin the blood are also used for
fall too low we are at risk for spontaneous
prevention.
38
TIPS TO RELIEVE
CONSTIPATION
thrombosis, blood clots form in the legs
Leukopenia is when white blood cells
Thrombocytopenia is when the level of
GI problems.
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
•
Eat more fiber-rich foods (whole
grains, fruits and vegetables)
•
Increase physical activity
•
Consider laxatives
•
Drink more water
FAT I G U E
TIPS TO RELIEVE
NAUSEA AND VOMITING
Feeling exhausted or extremely tired is
TIPS TO MANAGE
FATIGUE
the most common side effect reported by
patients.
•
•
•
•
•
Antinausea medications called
antiemetics may help
Fatigue is not relieved by a good night’s
Diet changes are useful. For
example, when you don’t feel like
eating, try frequent healthy snacks
rather than large meals
sleep; it can last for a short time or for
Bland foods, crackers, and clear
liquids between meals may be better
tolerated
stress, or anemia. Fatigue is considered to
Avoid foods with strong odors,
heavy spice, alcohol, and greasy or
fried foods
Suck on a lemon drop candy to
relieve nausea
many years. It is caused by many things,
Try to establish a daily routine
•
Listen to your body. Rest when you
need to
•
Mild exercise will help give you
more energy
•
Make lists of things you need to do
and recruit help
•
Make plans to get things done
during the time of day when you
have the most energy
•
If one reason for your fatigue is
anemia (a low level of red-blood
cells), seek medication to increase
the level of your red blood cells
•
Ask if drugs, like Provigil, may help
reduce fatigue
from tumor treatments to the tumor itself,
to the healing process, to poor sleep,
be one of the most debilitating symptoms
and side effects of a brain tumor because
it limits a person’s ability to function.
No matter what the cause, fatigue can be
managed. The goal is to conserve energy
so you can focus on doing the things that
are important to you.
•
CHAPTER 4 / MANAGING COMMON SIDE EFFECTS
39
C O G N I T I V E A N D B E H AV I O R A L C H A N G E S
A brain tumor and its treatment(s) can
More tools to cope with cognitive and
cause changes in a person’s behavior and
behavioral changes include:
ability to think. Patients may experience
difficulties with their communication,
concentration, memory, and their
personality may change.
These difficulties may affect a patient’s
ability to work or go about his/her daily
Cognitive Rehabilitation
Cognitive rehabilitation is designed
to help people regain as much of their
mental, physical and emotional abilities
as possible.
•
Anger management training,
counseling or medication can
help a patient who experiences
behavioral and personality changes
such as impulsiveness, frustration, or
moodiness.
Caregivers and/or family members also
Compensation techniques are
benefit from compensation techniques.
methods to develop alternate skills
Often, a caregiver feels frustrated (“Why
to make up for those that have been
can’t [the patient] do a simple task?”)
lost, such as exercises to strengthen
and angry (“He/She’s driving me nuts!”).
Medication may be prescribed to
sight, speech, and movement. When
Mixed emotions towards a loved one
reduce problems with cognitive and
full recovery is not possible, treatment
are common. These feelings make home
behavioral changes, and counseling may
includes compensation techniques like
life very complicated – especially as
help a patient recognize when they are
learning to live with memory loss by
people with brain tumors live longer in a
experiencing cognitive problems.
keeping calendars, reminder systems,
cognitively impaired state. It is important
and organizers. Neuropsychologists
that a caregiver has help or compensation
are cognitive experts that can help
strategies that he/she can use to maintain
identify compensation solutions or
the high level of patience that is required.
offer medications to enhance mental
(See Chapter 7)
life, and they do not always go away. This
can cause stress for both the patient and
his or her family.
•
functioning (for example, Ritalin).
40
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
EXERCISE YOUR BRAIN
PLAY TO YOUR STRENGTHS.
PRACTICE RELAXATION.
Use memory tools to help you
remember. Sticky notes, lists, and
always putting your keys in the
same place help take the
burden off your memory
systems. Tools (notebooks,
calendars) can also help
you remember.
Remember that stress plays a large
role in memory. Relax using yoga,
meditation, exercise, and other
techniques.
CHALL ENGE YOURSELF IF YOU CAN.
Puzzles, games, playing an
instrument, and reading all help to
improve your memory and thinking
abilities. Be patient with yourself.
GET ENOUGH SLEEP.
Your body needs 7-9 hours of sleep
per day. When you’re recovering
from brain surgery, you will want
even more sleep. Take cat-naps
during the day if you’re having
trouble with sleep during the night.
EXERCISE YOUR BODY.
Even light exercise
greatly improves mental
performance by bringing
oxygen and nutrients to
your brain.
At first I didn’t
realize how much
self-esteem I’d lost.
I’m in cognitive
therapy now
and it’s like psychotherapy.
Three weeks in and I feel better
mentally at work, and I’ve
noticed a difference in myself.
— Darren, patient
EAT RIGHT.
Focus on eating fruits and vegetables.
Keeping your blood sugar normal
improves mental performance. Adding
essential fatty acids (Omega 3s from
fish and flax seed), B-Vitamins, and
Amino acids will also help.
ADJUST MEDICATIONS.
If you think that your memory problems
may be worsened by something you’re
taking, ask your doctor.
CHAPTER 4 / MANAGING COMMON SIDE EFFECTS
41
ANXIETY AND DEPRESSION
Anxiety is a normal response to new
TIPS TO COPE WITH
EMOTIONAL DISTRESS
and stressful situations. Feeling anxious
•
every situation feel even more intense.
Common symptoms of anxiety include:
•
rapid heartbeat, fear, restlessness,
nervousness, and sweaty palms.
•
If you are feeling anxious it is important
Talk with friends, family, or spiritual
advisors about your feelings and fears
Make an appointment with a
counselor, therapist, or psychiatrist
for help
Join a support group or call a cancer
outreach program
•
Ask your doctor about medications
that can help
control in your life.
•
Try to solve only one problem at
a time
Often, depression and anxiety go
•
Use relaxation techniques to reduce
your body’s sensation of stress
or anxiety
•
Focus on living in the moment
to talk about your feelings and concerns,
and to find ways to regain a sense of
together. Depression is common in
people with brain tumors. People who
feel depressed experience a sense of
medication and counseling. Just talking
about how you feel with someone skilled
from the diagnosis or from medications
that increase agitation may make
Treatments include antidepressant
in relieving emotional problems can help
make you feel better.
Most people note that their mood improves
as the symptoms of a brain tumor or side
effects from treatment are managed and
go away.
WAYS TO FIND A
TRAINED COUNSELOR
•
Ask your doctor for an oncology
social worker referral (a counselor
who specializes in cancer)
•
Request to talk with the
psychiatric liaison nurse in your
treatment center
•
Contact the Cancer Support
Community or other cancer
support organizations poised to
help (see resources section)
•
Contact your insurance company’s
mental health service for a referral
irritability, hopelessness, an inability to
concentrate, apathy, withdrawal, and
mood swings – sometimes a desire to
harm themselves. While many of these
symptoms can be attributed to a tumor,
depression can and should be treated
on its own.
42
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
HORMONAL CHANGES, FERTILITY AND SEXUALITY
Hormonal Changes
TIPS TO RESTORE
INTIMACY
Changes in hormones and endocrine
function may result from a tumor found
in or near the hypothalamus, pituitary or
radiation therapy. If left untreated,
•
disturbing, chronic problem that causes
mood and personality changes, as well
Communication is essential. To
feel connected with your partner,
consider how he/she “hears” what
you want to say
Find ways to feel more attractive to
yourself, and in turn, to your partner
either temporarily or permanently.
Options are available for people who wish
to get pregnant after treatment, but you
must speak up before treatment begins to
consider sperm or egg banking, or tissue
Be open to discovering new ways
that you and your partner can
connect and feel close
freezing. Insurance coverage is not
•
Remember to make small, intimate
gestures, like a smile, a touch, or a hug
before you begin.
•
Look online for the American Cancer
Society’s booklet on sexuality and
intimacy after cancer (www.cancer.org)
•
as sexual dysfunction. These conditions
require specialized treatment and
monitoring by an endocrinologist.
Many of the treatments used for brain
tumors can impact a person’s fertility
•
pineal glands, or as a delayed effect of
hormone disruptions can become a
Fertility
consistent for these things, so ask your
insurance company what’s covered
Sexuality
Changes in sexuality from treatment or a
tumor can result from a decreased libido,
fatigue, changes in self-image (from the
surgery and treatment). Many people
don’t feel comfortable talking about this
problem with their doctor, although it
might be important to do so. Consider
that your doctor or nurse may have
helpful suggestions and advice.
CHAPTER 4 / MANAGING COMMON SIDE EFFECTS
43
Complementary or Alternative Medicine (CAM)
The medical community is increasingly
recommending complementary medical
techniques to relieve symptoms for brain
tumor patients. CAM is primarily used to
relieve side effects and stress.
The most common CAM techniques are:
eating a plant-based diet, relaxation,
exercise, acupuncture, chiropractic, guided
imagery or meditation, healing touch (such
as Reiki), herbal medicine, and massage
therapy. If you choose to use a CAM
approach, then it is important to inform
your medical team. In some cases, CAM
practices could impact the way traditional
cancer treatment is provided, so it’s a good
idea to keep your medical team informed
about your entire system of care.
To learn more about CAM,
look for information on the
National Center for Complementary
and Alternative Medicine’s website:
nccam.nih.gov.
44
DIET AND NUTRITION
EXERCISE
The purpose of a nutritious diet is to provide
energy and to improve immune functioning.
Most often, people are asked to eat more
plant-based foods (vegetables, fruits,
beans and whole grains) – while avoiding
or minimizing processed foods, refined
sugars, meat and cheese. A plant-based
diet has been shown to improve our body’s
ability to fight disease, reduce blood
pressure, reduce cholesterol, and improve
overall health. Avoiding cured food (like
deli meat or salted chips) and eating more
whole foods high in antioxidant vitamins
may lessen the risk of developing additional
cancer – and over time – improve your
body’s ability to fight the cancer you have.
The goal of exercise is to enhance—
rather than deplete—energy, strength,
and vitality. It helps you breathe properly
and increases your lung capacity, which
in turn benefits the immune system. It
also improves muscle strength and heart
health. Patients who must take steroids
for long periods of time minimize damage
to muscle strength with exercise. Several
studies have shown that exercise can help
people have better treatment outcomes, as
well as secondary psychological benefits.
There are some worthy diet recommendations
available, such as in Eat to Live by Joel
Fuhrman, MD, or Eating Hints: Before,
During, and After Cancer Treatment by
the National Cancer Institute. Under all
circumstances, it is best to eat whatever
food you can tolerate. Talk to a dietician
educated in working with cancer patients,
and ask your neurologist if a diet you’d like
to use is safe for you.
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
Exercise can be simple, or more intense,
depending on your ability. You can
start with walking, light weightlifting, or
practices such as Tai Chi, yoga, or Pilates.
It is helpful to start slowly with a goal to
build up your energy level and abilities.
H E A LT H Y E AT I N G T I P S
GREAT F O O DS TO E AT
30-60%
•
Vegetables
1/2 Raw, 1/2 Cooked
•
10-40%
Fruits
raw and cooked colorful
vegetables: dark green,
deep yellow, orange,
red, or purple
raw and cooked lightly
colored vegetables:
cauliflower, mushrooms,
onions, cucumber,
lettuce
•
raw and cooked starchy
vegetables: squash,
potatoes, corn
•
fresh and dried fruits,
avocado
•
nuts, seeds and oats
•
tofu and beans
S TAY HYDRAT ED
10-40%
Beans/Legumes
•
water
•
decaffeinated tea
•
fruit juice
•
fruit smoothies
•
coconut, almond,
or rice milk
•
processed foods with
food coloring and
saturated fats
•
fried foods
•
cheese
10-20%
Seeds, Nuts, Whole Grains
5-10%
Fish, Eggs, Poultry, Dairy
1-5%
Beef, Sweets, Cheese,
Processed Foods
F O O DS T O LIM IT
•
cured meats
•
red meat
•
alcohol
•
sugary sweets
CHAPTER 4 / MANAGING COMMON SIDE EFFECTS
45
Our dietician was so helpful. She gave Darren tips
to feel more energy, tips to get more liquid into his
diet when he was dehydrated, tips to address lots of
side effects. And it works. …It’s funny, we thought
we ate healthy before, but the dietician showed us
how we really ate! Now we do better.
— Carrmen and Darren, caregiver and patient
— Tony, patient
Quality of Life
CHAPTER FIVE / QUALITY OF LIFE
I hate that phrase,
“live like you’re dying” –
I say: Live like you’re
alive, and re-think
what your definition
of alive is.
CHAPTER FIVE / QUALITY OF LIFE
C H A P T E R 5 / Q U A L I T Y O F L I F E .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 7
Coping with your diagnosis................................................................................ 48
The value of support........................................................................................... 49
Relationships.. ..................................................................................................... 51
Spirituality.. ......................................................................................................... 53
Making plans for the future................................................................................. 54
5
Quality of Life
Generally, people who are well informed about their illness, treatment, and resources for
support are more able to make decisions that take into account their quality of life and
overall wellbeing.
††
††
††
††
THINGS TO REMEMBER
You and your loved ones can learn to adjust
to a new perspective on life.
When problems arise, consider active
coping strategies (see p. 48), to identify
solutions that you can live with.
Value support from others with experience.
Take the time you need to experience
your grief.
††
††
††
Think about how to get help for your
immediate caregivers, to avoid them from
“burning-out.”
Find a sense of peace and meaning in
your life by tapping into your spirituality
and/or other things that bring you comfort.
Make plans for the future, with realistic
intentions and without regret.
CHAPTER 5 / QUALITY OF LIFE
47
COPING WITH YOUR DIAGNOSIS
Coping with the Fear of Recurrence
When you feel overwhelmed about
ACTIVE COPING
your diagnosis (or any problem for that
matter), it’s useful to think about how you
react in difficult situations. Many people
•
Define the problem: break it into
smaller parts
•
Decide which elements of the
problem you can control, and which
you can’t
find that an “active” coping style reduces
stress and improves their focus when they
try to solve serious problems.
When you are making treatment
as long as possible, but for how long is
unknown.
•
Make a plan and take action to deal
with the problem
follow the post-treatment monitoring
•
If the problem cannot be solved, try
to adopt a new perspective to make
it an issue you can live with
•
Acknowledge your feelings
It helps to recognize that you don’t have
•
Find a support group or counselor
to sort everything out at once. It may take
•
Build relaxation into your schedule
(Yoga, exercise, music, reading)
some time to deal with each issue that
most often, to prevent recurrence for
One of the best safeguards for your
to bring you closer to your quality of life
goals.
genuinely fear. The goal of treatment is,
Look for advice and information to
address the problem
life. You have to define what “quality”
means to you, then take reasonable steps
people diagnosed with a brain tumor
•
decisions and learning how to manage
your diagnosis, consider your quality of
The risk of recurrence is one issue that
you face, so ask for help if you need it.
quality of life is to be familiar with and
plan set by your medical team. The
earlier a problem is detected, the more
options you may have for re-treatment.
If additional treatment is suggested,
consider the possible risks and benefits
of treatment, and it’s often helpful to get
a second or even third opinion before
deciding what to do.
It is likely that your doctor or nurse will
One of the hardest realities for most
know who you can contact for additional
of us is the unknown. When you allow
support.
thoughts of tumor recurrence to disturb
your ability to enjoy life, or to depress
you, then it’s time to get help.
48
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
T H E VA L U E O F S U P P O R T
By developing a new perspective on life,
How you feel can have implications
Get the Support you Need
no matter how awkward or foreign it may
on your quality of life and the way you
There are many ways to get the support
initially feel, it has helped many people
experience your diagnosis. It’s important
you need. Part of the challenge is
come to terms with the unknowns in
to stay in touch with your feelings and
accepting that you’d like support, and
their lives. They may find peace and new
seek support when you need it.
that it’s okay. If you already have people
meaning. They realize they may need to
you can talk with and lean on, use
shift priorities and focus on ways to enjoy
EXPRESSING YOUR
EMOTIONS CAN
life, and each moment in it, differently.
It sounds cliché, but if you can focus on
keeping a healthy lifestyle and spending
more time doing things that make you
understand, seek them out. Knowing
that you have people to talk with about
•
Decrease anger or feelings
of hostility
•
Improve self-confidence and
assertiveness
•
Improve feelings of empathy,
interest, and humor
and others in your life feel happy, it
makes a difference, and can push the
them. If you’d like to find people who
fear of recurrence away. It’s valuable to
difficult emotions is essential when
coping with a brain tumor.
Support Groups
No one understands the experience
focus on what you can control, such as
•
Improve energy (reduce fatigue)
of someone affected by a brain tumor
your highest quality of life, rather than to
•
Improve overall quality of life
more completely than somebody else in
focus on what you can’t control, such as
cancer recurrence.
the same situation. That is the basis of
support groups.
Support groups serve several functions.
They give patients and families
opportunities to talk with knowledgeable
people, including health care professionals,
who can educate them and provide
information about their disease.
CHAPTER 5 / QUALITY OF LIFE
49
They offer emotional support and
practical insight to help cope with the
GREAT RESOURCES FOR SUPPORT GROUPS
crisis of a brain tumor diagnosis. And
or more information on support groups, talk with the social worker or nurse
F
at your treatment center or ask:
they can smooth the transitions that
patients and families must make as they
•
deal with unfamiliar environments, such
as hospitals and outpatient clinics.
Professional Counseling
Many people benefit from personalized
help in dealing with emotional stressors.
•
To find a counselor or psychiatrist with
experience in helping people with cancer,
specifically brain cancer, again ask your
doctor or nurse. Often, the treatment
center’s social worker or a spiritual leader
can offer guidance at no additional cost.
50
•
National Brain Tumor Society
www.braintumor.org
NBTS offers information about
one-on-one and online support
specifically for brain tumor
patients with links to several other
organizations that can help.
T.H.E. Brain Trust
www.braintrust.org
T.H.E. Brain Trust offers a large
variety of online support groups
for specific brain tumor types and
caregivers.
Imerman Angels One-On-One
Cancer Support
1-877-274-5529
www.imermanangels.org
Imerman Angels carefully matches
a person touched by cancer with
someone who has fought and
survived the same type of cancer.
Personalized matches are also
provided for cancer caregivers.
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
•
Cancer Support Community
1-888-793-9355
www.cancersupportcommunity.org
CSC offers on-site or online support
groups for a variety of cancer types
and caregivers.
•
American Cancer Society
www.cancer.org/treatment/
supportprogramsservices/index
ACS offers a search tool to find
cancer support groups located in or
near your zip code area.
•
American Brain Tumor Association
www.abta.org
ABTA offers a list of brain tumor
support groups by state, with a zip
code search.
•
Musella Foundation
www.virtualtrials.com/lists.cfm
Musella Foundation offers online
support groups for people affected
by brain tumors.
R E L AT I O N S H I P S
Talking about your Diagnosis
Children sense and know more than
Many people, understandably, find it
adults often give them credit for. Children
difficult to talk about their diagnosis with
will overhear telephone conversations,
others. First you’ll have to decide who you
pick up their parents’ anxiety, blame
need to tell – and what you want to tell.
themselves, and fear the worst if they
You may decide that you have different
are given no information. When a parent
groups of people that you’ll talk with
has a brain tumor, the natural desire is
about different things. It can help you feel
to protect the children through silence –
better, and the people you talk with will
but that usually backfires and makes
also feel good as they find ways to help
things worse.
and support you.
QUESTIONS ABOUT
HEREDITY
Only 5-10% of brain cancers are
hereditary. If you have questions about
your family history, we suggest the
following:
•
If you have multiple family members
diagnosed with brain tumors or
have concerns about starting a
family after having a brain tumor
yourself, consider a consultation with
a genetic counselor. He or she can
access the latest genetic information
related to the specific tumor type
in your family and advise you
accordingly.
•
Share your family’s medical history
with your kids and help them
become good medical historians as
their own future health is monitored.
Young children up to the age of eight
There are people who will be directly
will not need a great deal of detailed
affected by your experience (family
information; older children and
members, close friends, your boss). These
adolescents will need to know more. In
people should know what you’re going
a two-parent household, try to talk to
through so they understand the stressors
each other first, to determine the best
that you must face, and the schedule
way to talk to your children. If single
changes that you’ll experience.
parents are feeling a bit anxious about
the conversation, they may want to ask a
relative or friend to be present.
Although no one wants to alarm children,
there is nothing wrong with crying when
a crisis happens. Crying is normal and
healthy.
CHAPTER 5 / QUALITY OF LIFE
51
How your Diagnosis Impacts Others
When friends and family want to help,
Keep in mind that most people offering
Different people will react differently to
it can be useful to put together a list of
help are eager to do something—and by
your news; some will be eager to help,
tasks that are easy to delegate. Be specific
allowing them to be supportive, they will
while others will withdraw and not know
about what you need: a drive, help with
feel appreciated. Similarly, it’s important
what to do.
shopping, help making phone calls.
not to over-use supportive people; take
note of when they need a break.
It is not uncommon for a serious
diagnosis to produce changes in
personal relationships. This is because
it is stressful, because brain tumors
can change a person’s personality, and
because they can leave people unable to
function the way they used to. Relatives
and close friends may find behavioral
changes hard to deal with.
On the other hand, many feel that their
marriage or relationship is strengthened
through the process of dealing with a
crisis together. They are grateful to have
each other’s support.
As a caregiver, it’s
important to know that
your loved one may not
be aware of how their
behavior impacts you.
You must be able to find
the support you need to
take care of yourself. You
will need all the strength
you can get.
— Candice, caregiver
52
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
SPIRITUALITY
Humor
The crisis of a brain tumor diagnosis
It can be helpful to talk to your pastor,
Is a brain tumor humorous? No, but
often helps people gain insight into
rabbi, imam, or a spiritual counselor in
learning to laugh at life’s challenges has
their beliefs and spirituality. Each of us
your community. Members of religious
been shown to help people cope better
holds beliefs about life, its meaning, and
and spiritual communities also may
with difficult situations. Being able to
its value, whether we participate in a
provide practical help, such as assistance
find humor in life can be calming when
religious tradition or not. Prayer may be
with transportation, meals, and visitation
dealing with a brain tumor diagnosis.
comforting and help you feel less alone.
services.
Humor therapy is an actual science. It is
Some people find comfort in their
used to improve quality of life, provide
spiritual beliefs while others question
pain relief, encourage relaxation, and
their faith, possibly feeling distressed
reduce stress. The physical effects of
by the idea that the illness might be a
laughter include increased breathing,
punishment for some past sin or lack of
increased oxygen use, short-term changes
faith. Having doubts and being angry are
in hormones and certain neurotransmitters,
normal responses.
and increased heart rate.
Most often, finding the humor in life
is something you and your friends can
focus on anywhere, anytime.
CHAPTER 5 / QUALITY OF LIFE
53
MAKING PLANS FOR THE FUTURE
Hope is a powerful concept and coping
GAIN A NEW
PERSPECTIVE…
strategy that empowers people to look
beyond the moment and into the future.
Your sense of “hope” can change over
•
Remember to do things that make
you happy
•
Spend more positive time with
family, friends, and loved ones
•
Seek a more meaningful job
•
Volunteer to help others (like
becoming a brain tumor advocate)
•
Focus on your health: quit smoking,
eat better, exercise more
•
Become more spiritual, whatever
that looks like for you
time. It’s not about being positive all of
the time, but about trying to view things
from a positive perspective as much
as possible.
When you make plans for the future, keep
hope in mind. Make reasonable plans
based on your well-being at the time.
Patience is important. Simple plans can
be appreciated just as much as larger
goals for the future.
GET INV O LV E D TO HE L P OTHE RS
National Brain Tumor Society, www.braintumor.org
Accelerate Brain Cancer Cure, www.abc2.org
Imerman Angels, www.imermanangels.org
54
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
It has been six years since my
diagnosis and treatment. I have
dedicated my life to helping
those going through cancer
or caring for someone going
through cancer. There is so much
that a person like myself can do
to help.
— Greg (from the National Brain Tumor
Society’s Story Corner)
— Carrmen, caregiver
Practical Considerations
C H A P T E R S I X / P R A C T I C A L C O N S I D E R AT I O N S
There’s a lot we can
do, so I’m ready to
fight and keep fighting
with Darren. We’re in
this together.
C H A P T E R S I X / P R A C T I C A L C O N S I D E R AT I O N S
C H A P T E R 6 / P R A C T I C A L C O N S I D E R AT I O N S.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 5
Going back to work............................................................................................. 56
Talking with your employer................................................................................ 57
Employment laws and financial support............................................................ 58
Managing medical costs. ..................................................................................... 59
Considering private home care and long term care........................................... 60
Practical, legal, and estate planning................................................................... 61
Death and dying.................................................................................................. 62
Your caregivers.. .................................................................................................. 62
6
Practical Considerations
There’s so much more to consider than treatment and recovery. There’s work, finances,
family, and the future. What’s really important to you and what isn’t? What do you need
to do now and what can you do later?
††
††
††
††
THINGS TO REMEMBER
Going back to work is a practical and
personal decision.
Review your goals, perspective or abilities
after a brain tumor diagnosis.
There are federal laws and supports that
can protect someone with cancer from
losing their job due to new disabilities.
Aim to manage medical costs in an
organized and informed way.
††
††
††
Making practical end-of-life plans helps
everyone, whether healthy or ill. If you don’t
already have a will and advanced directives in
place, consider making these plans now.
You can gain control over the future and
make plans that give everyone involved a
sense of peace.
Caregiving is a difficult job. People who
need help should be aware of how their
caregiver is coping and aim to find balance
with everyone’s changing role.
C H A P T E R 6 / P R A C T I C A L C O N S I D E R AT I O N S
55
GOING BACK TO WORK
There is not one “right” answer about
Sometimes an employer can arrange for
It will take time to come to terms with
working full-time, part-time, or not at all
you to take on another role until you are
career changes, and to determine what
during or after treatment. This is a
fully better, or you may ask to go back
you would like to do next. If you think
practical decision, based on your needs,
to work part-time until you regain your
you’ll need to choose a different type of
abilities, and personal preferences. Some
strength.
work or need financial guidance, then it
people make a complete recovery from
may be useful to see a social worker or
their brain tumor while others have
counselor for help.
lasting effects. It isn’t always possible to
know how things will turn out.
Your health care team can suggest how
THINGS TO CONSIDER ABOUT WO RK
your treatment and prognosis might
affect your ability to work, so it can help
to talk with them about your job and your
work-based priorities through treatment
and recovery. Consider what’s best for
you at each point in your experience.
If you hold a job where your mental skills
•
Do I enjoy my work and/or find it a
welcome distraction?
•
Have my career priorities changed?
•
What does my health care team
recommend?
•
Can I complete my work functions
while in treatment?
•
What should I expect about my
abilities and side effects after
treatment?
•
How much sick leave do I have?
•
Am I eligible for the Family Medical
Leave Act if I need to take time off?
are important, or where your strength is
needed for heavy machinery, you may not
be able to continue at the same level. This
can feel devastating.
56
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
•
Does my state offer short-term disability
insurance? Or can I receive disability
insurance payments through my
employer or private insurance?
•
Will I qualify for long-term Social Security
Disability Insurance (SSDI)? If so, do I
have savings to carry me through the 5-6
month waiting period?
•
If I decide to stop work temporarily, how
will this affect me and others?
•
If I decide to stop work, what will I need
to do to keep health insurance?
TA L K I N G W I T H Y O U R E M P L O Y E R
How much you tell an employer about
No matter what type of relationship you
Make note of anything that could indicate
your health is an individual decision.
have with your boss, it’s good practice to
discrimination. In the unlikely event that
Some people find it helpful to tell
keep records of your conversations
you have problems with your employer
their employers about their diagnosis,
regarding your diagnosis. If you request
in the future, careful records can prove
while others wish to keep it private. Do
accommodations for your work, ask for
invaluable in your defense. Your state’s
whatever feels right to you.
this in writing. You may also want to
fair employment agency can help you
make a copy of any recent performance
with additional questions.
An advantage to letting your boss know
is that it may be less stressful when you
need to rearrange your work schedule or
reviews and any positive statements
about your work.
miss a substantial amount of time at work.
As long as you can do your work, there are
laws to protect you from discrimination
due to a brain tumor diagnosis.
If you go back to work with a scar on your head,
people are going to question not only how you’re
doing, but also your work product. You have the
burden of proving that you’re healthy and proving
that you’re competent. I think that takes a toll on
you… especially because things aren’t exactly the same.
— Archie, patient
C H A P T E R 6 / P R A C T I C A L C O N S I D E R AT I O N S
57
Employment Laws and Financial Support
AMERICANS WITH
DISABILITIES ACT (ADA)
The ADA is a federal law that protects
workers with a disability (including a brain
tumor and/or effects of treatment) against
discrimination as long as a worker can
complete his/her job. The law requires
that employers make reasonable
accommodations so people with
disabilities can function. This might include
modifying a work schedule or making the
physical workplace accessible with things
like hand rails or tools for hearing loss.
You can ask your medical team about
accommodations if you need them.
FAMILY AND MEDICAL
LEAVE ACT (FMLA)
The FMLA entitles eligible employees to
take up to 12 workweeks of unpaid, job
and benefit-protected leave in a 12-month
period for specified family and medical
reasons. FMLA covers time to care for a
spouse, parent or minor child with a serious
health condition, or to take personal
medical leave. This law only applies when
an employer has 50 or more people
employed within 75 miles, and when a
worker has worked for at least 1,250
hours during the past year.
58
The law does say that when leave is
needed for planned medical treatment, the
employee must make a reasonable effort
to schedule treatment in a way that won’t
disrupt the employer’s operation.
If you have questions about these
and other benefits, such as Employer
Sponsored Insurance provided by
your employer, you should discuss this
specifically with your boss and/or your
human resources department.
SOCIAL SECURITY DISABILITY
INSURANCE (SSDI)
SSDI is a federal program through the
Social Security Administration that provides
a monthly payment to people who have
worked for a sufficient period of time, paid
Social Security taxes, and are deemed
“disabled” by Social Security. In addition
to the monthly check (paid after a waiting
period), after two years of receiving this
monthly benefit, SSDI recipients are also
entitled to Medicare.
Many people diagnosed with mid to
late-stage brain cancer qualify for SSDI.
If you are not working and you think you
might want to apply, it is helpful to start
sooner rather than later. The Social Security
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
Disability application process can take more
than 100 days; and a year or longer if you
have to appeal.
SUPPLEMENTAL SECURITY
INSURANCE (SSI)
If you have a very low income and minimal
savings and assets you may qualify for
benefits. These would begin immediately.
You would be able to receive monthly
payments during the SSDI waiting period,
if you qualify.
You may also qualify for the Supplemental
Nutrition Assistance Program (SNAP,
formerly Food Stamps) and Medicaid.
Medicaid can be a welcome relief, if you
are struggling to pay for private medical
insurance and qualify. The social worker or
financial counselor at your treatment facility
can provide more information.
For more information about
co-pay assistance programs,
see p. 70.
To apply for SSDI or SSI: call
1-800-772-1213; go online to
www.socialsecurity.gov/disability.
MANAGING MEDICAL COSTS
The very first question you may ask
Try to anticipate and plan for the many
yourself about managing the financial
costs that can accompany a brain tumor
aspects of your diagnosis is: “Am I able
diagnosis. These costs can include
to coordinate the financial piece of my
special medications and supplements
medical care right now?” If you answer
not covered by insurance, child care,
“No,” perhaps you can ask a friend
elder care, transportation, parking,
or family member to do this for you.
food delivery – in some cases, even oral
Insurance companies can sometimes
chemotherapy. Though this can seem
assign a caseworker to help you navigate
overwhelming (especially with concerns
insurance benefits and costs. Often,
about your health), it’s helpful to feel like
people can use some help.
you have a plan in place to manage the
PRACTICAL TIPS FOR
COPING WITH THE
COST OF CARE
•
Get a notebook to record your
expenses, conversations with the
insurance company, medical
appointments, and other pertinent
information (date, time and who
helped with what).
•
Pick a certain day to be ‘health care
bill day.’ Use this allotted time to
work on the task of keeping things
organized. This will prevent it from
becoming overwhelming.
•
Get an accordion folder to help you
file papers so you can find them
easily, or ask for electronic billing
information so you can create
electronic files you can access.
•
Identify one spot where you and
someone you trust can easily access
bills, paperwork, and notes.
costs of care.
COPING WITH THE COST OF CARE
Frankly Speaking About Cancer: Coping with the Cost of
Care is a free publication by the Cancer Support Community
that can help guide you through the financial impact of
medical care.
rder this booklet through www.cancersupportcommunity.org
O
or by calling 1-888-793-9355
C H A P T E R 6 / P R A C T I C A L C O N S I D E R AT I O N S
59
C O N S I D E R I N G P R I VAT E H O M E C A R E A N D L O N G T E R M C A R E
Private duty or custodial care includes
QUESTIONS FOR YOUR
HEALTH CARE TEAM
services such as having someone drive
QUESTIONS ABOUT
LONG-TERM CARE
to your home to fix meals or drive you to
medical appointments. When this type
•
What local organizations provide
low-cost or free private duty care or
other services?
•
Should I plan financially for long-term
medical care such as a nursing home
or hospice care?
of help is needed, it’s good to know what
costs are involved. Unlike home health
care with skilled nurses, private duty or
companion care are usually not covered
by health insurance.
Similarly, long-term care is not typically
covered by health insurance. Long-term
•
Who can help me understand my state’s
Medicaid rules (www.medicaid.gov)
for long-term care and my eligibility?
care involves extended care at a nursing
home or other specialized facility for a
longer period of time than rehabilitation
care.
60
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
•
Are private duty care and longterm care covered under my health
insurance policy? If not, can I
purchase this additional coverage
now?
•
Do you have a special rate for
people paying out-of-pocket?
P R A C T I C A L , L E G A L , A N D E S TAT E P L A N N I N G
It’s helpful for all adults, regardless of
Living Will
Financial Power of Attorney
their current health status, to prepare for
The living will is a legal document that
A trusted person is legally named Financial
the future by having their affairs in order.
states whether or not we would like to
Power of Attorney to make financial
Ensuring that legal documents exist,
be placed on life support if our bodies
decisions on our behalf when we are
including a will, living will, and advanced
cannot survive without such “heroic”
incapable or otherwise desire assistance
directives, will help maintain your sense
intervention. This information should
with money and finances. If you have to
of control and provide you and your
be given to doctors and family members
manage multiple bank accounts, know
family with guidance.
when we are still actively making our
that each bank or financial institution may
own decisions. Most doctors have a
require you to file separate forms of proof.
It helps to talk with those closest to you
about questions like: “At what point is it
time to stop active treatment?” and “How
does what I leave behind affect my family’s
standardized state form available. Once
completed, all people involved should
have a copy.
Will
The Will is a legal document that defines
future?” These are difficult discussions,
what we want to do with our property,
money, and other possessions (including
for those closest to you, and prevent
Health Care Proxy or
Medical Power of Attorney
problems later.
This is a legal document that allows us to
be a key element of a Will. If a person has
appoint a trusted person to make medical
no written Will, the laws of the state can
decisions for us if we cannot make them
determine how wealth and children are
for ourselves. In many states, the person
passed along to family members.
but it’s important to provide direction
There are several important documents
to consider for advanced care planning.
If you have questions, please speak with
your doctor, nurse, or social worker.
children) after we die. Guardianship may
you appoint (your Medical Power of
Attorney) is able to speak on your behalf
if you are not able. It is important that this
person knows your wishes and is willing
to take responsibility.
These documents can be created
independently (you can look online to
find sample forms for you and your family
to fill-out and keep on record), or
formally with a lawyer.
C H A P T E R 6 / P R A C T I C A L C O N S I D E R AT I O N S
61
D E AT H A N D D Y I N G
YOUR CAREGIVERS
When you are diagnosed with a
As a person receiving help, you may
honestly with your caregiver, and get a
potentially life-threatening illness, it’s
resent the need after being able bodied,
sense of when and how they could use a
common to think about death. It’s normal
or feel terrible guilt for being a burden
break. Try to express your appreciation
for people diagnosed with a serious brain
on someone you love. Perhaps you don’t
when you can. There are many things
tumor to want to discuss the possibility of
even realize that you are using a loved
that can help your caregiver cope with
death and to anticipate what they might
one’s time. It’s valuable to look at how
their new role — Chapter 7 offers some
want or need in the weeks, months or
caring for you is affecting your loved one,
guidance.
years ahead.
from their eyes. Living with someone who
On the other hand, individuals might
has a serious disease is not easy.
not want to discuss this, because it’s
Most caregivers are happy to help and
difficult or sad. These discussions can
don’t want you to feel guilty about what
be important and powerful parts of the
they can provide. It’s important to talk
coping process.
Talking openly about your feelings and
desires can help you and your family
to maintain control over this time,
and provide you the opportunity to
accomplish certain goals or put closure
to matters. It’s valuable to feel prepared
for whatever lies ahead. Remember that a
social worker or professional counselor is
When I was diagnosed, I wanted
to know “what did I do wrong?”
I realize the answer is “Nothing”…
but still, that’s infuriating!
— Tony, patient
always someone who can help ease and
enlighten these discussions.
62
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
— Sarah, caregiver
Care for the Caregiver
CHAPTER SEVEN / CARE FOR THE CAREGIVER
Don’t lose sight of
yourself. It’s easy to
get wrapped-up in the
process of appointments
and waiting. Don’t get
caught up. Take even 5
minutes to find out what
you need for yourself.
It’s not easy, but you
have to take care of
yourself too.
CHAPTER SEVEN / CARE FOR THE CAREGIVER
C H A P T E R 7 / C A R E F O R T H E C A R E G I V E R.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 3
Care for yourself. . ................................................................................................ 64
Making important decisions............................................................................... 65
Finding support and help................................................................................... 66
Moving forward................................................................................................... 67
Bereavement....................................................................................................... 68
7
Care for the Caregiver
A caregiver is anybody who provides unpaid help, or arranges for help, to a relative
or friend because they have an illness or disability. Help can be physical, emotional,
spiritual, financial, or logistical.
††
††
††
††
THINGS TO REMEMBER
You can be a tremendous resource to help
your loved one think through treatment
options, goals and priorities during this
difficult period.
Reach out to others who are also caring
for someone with a brain tumor. These
individuals are often helpful.
Say YES! Remember that it’s vital to ask for
and accept help.
Be mindful of your own needs and feelings.
There are many ways to support your loved
one without neglecting your own physical,
economic, spiritual and emotional well-being.
††
††
††
††
Talk with the doctors about what to expect
and how to plan. Recovery after treatment
can take a long time, it helps to feel
prepared.
End-of-life care plans can be helpful. Make
sure that all family members are on the
same page, and that the doctor is aware of
your loved one’s preferences.
Enjoying life is about how you and your
loved one focus on the things that really
matter.
If you are grieving the loss of the
life you knew, give yourself time
to grieve.
CHAPTER 7 / CARE FOR THE CAREGIVER
63
CARE FOR YOURSELF
People who are forced to adopt a new
People who care for someone with a
role as “caregiver” have shared that as
serious illness can forget to take care of
they gain information about the disease,
themselves and can neglect their own
options for treatment, expectations for
needs. It becomes hard to focus on work,
recovery, and resources for support,
household responsibilities and other
they begin to feel more confident about
demands, yet those pressures continue.
managing the task before them, and
There are many ways to build-in time for
their fear, anger, and frustration begin
your own care, and this is essential for
to dissipate.
your physical and mental wellbeing. Take
TIPS TO MANAGE
DIFFICULT MOMENTS
•
Recognize feelings such as guilt,
resentment and anger. Admit them if
it will help you address the problem
rather than ignore it or let anger grow.
•
Be compassionate with yourself.
There’s no one way a caregiver
should feel. Give yourself permission
to separate your feelings from your
actions.
•
Reach out to your own support
network for some coping ideas.
Call a family meeting and say, “Let’s
figure out how we can help each
other.”
•
Set limits. Take time on a regular
basis to care for yourself. Your
batteries must be recharged so you
can be a better caregiver over the
long haul.
•
Remember that you do not need
to have all the answers or fix all the
problems.
•
Often, just “being there” and quietly
listening is all that’s needed.
time for yourself – this is not selfish.
When a Loved One’s
Personality Changes
Aim to find a balance between caring for
Depression, anger, confusion and
caring for others in your life. The patient
mood swings are common symptoms
will benefit most from being with you
for individuals with brain tumors.
when your own life is in balance–and
These symptoms can be caused by the
you will be less likely to feel exhausted
tumor, the treatment, or may have been
or resentful about caregiving.
your loved one, caring for yourself, and
present before. Regardless of the source,
personality changes in someone you
care for can be very challenging. These
changes can be subtle or drastic. Speak
with your doctor if you notice these
types of changes. The symptoms may be
treatable.
64
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
Making Important Decisions
Many people with a brain tumor diagnosis experience changes in their ability to think
clearly and process information. This may be due to the tumor, treatment or simply feeling
overwhelmed by the diagnosis. Whatever the cause, a loved one is often responsible
for setting the course for a patient’s care as their advocate. If you must be the treatment
decision-maker, know that you can take some time to ask questions, research options, and
find support.
Before you can know what’s needed and what you can do to help, you must understand
the situation.
1. Learn about the brain tumor
including its location, grade, treatment
options, anticipated treatment side
effects, and expectations for recovery.
2. Try to identify the top medical
centers and experts in your loved
one’s (or your) area for a second
opinion or additional services, as
needed.
3. Research information on credible
websites, like through the National
Cancer Institute, and the National Brain
Tumor Society.
4. Weigh the pros and cons of each
treatment option with your loved one,
including elements like time, where
treatment will be given and cost.
5. Create a “to do” list with your loved
one of immediate versus long-term
needs. Decide what your loved one
can address independently, what you
or someone else can address from a
distance (via phone or internet) and
what requires hands-on support.
6. Recognize and respect the unique
capabilities of your loved one and their
wishes and desires, in addition to the
roles played by others involved.
7. Set limits. Define what you can and
can’t reasonably do for your loved one.
8. Organize a care-plan featuring
coordination and open communication
among all participants (who is doing
what, when?). This plan will help reduce
family stress and bring needed relief.
9. Remember that each stage of care
requires different levels of support,
and everyone’s roles will change along
the way. Brain tumors are not the same
as other major life events; they can be
ongoing and often unpredictable. Try
to think through reasonable short- and
long-term expectations.
10. Secure proper authorization that
allows you to gather copies of medical
and treatment records (including
operation reports and x-rays). By
obtaining legal “Power of Attorney”
you will be granted this authorization.
This will help with follow-up care plans
and future medical needs.
11. Utilize an oncology social worker
at the cancer center or affiliated with
the oncologist. They offer a wealth
of information and can answer many
logistical and financial questions.
12. Enjoy your relationship. Try to value
the time you spend with your loved
one, because every moment is special.
CHAPTER 7 / CARE FOR THE CAREGIVER
65
FINDING SUPPORT AND HELP
Cancer Support Community
Evaluating your Needs
that the doctor, nurse, and social
www.cancersupportcommunity.org
If your loved one is not receiving the
worker can give you, there are several
Provides education, free online support
help you hoped for or need, it may be
organizations and websites designed to
groups, and discussion boards for people
time to regroup. Are your expectations
help family caregivers and volunteers
affected by cancer and their caregivers.
realistic? If you’re not sure, have an
My Lifeline
honest conversation with the medical
www.MyLifeline.org
team. If your expectations are realistic
Those with cancer can create their own
but not being met, you may need to
National Brain Tumor Society
personal webpage to communicate
secure a different type of support. Try
www.braintumor.org
with family and friends. Pages include
to brainstorm creative ways to address
Offers information, connection, and
online calendar tools, scheduling
each issue by breaking problems into
advocacy for people affected by brain
timelines, and information about ways
smaller parts and tapping into additional
tumors. NBTS has excellent resources
friends and family can offer support.
resources.
Above and beyond the specific advice
get help and get organized. Look through
the resources at the end of the book,
•
•
and consider:
•
listed throughout their webpages.
•
•
Musella Foundation for Brain Tumor
American Brain Tumor Research & Information
Association’s Connections www.virtualtrials.com
Online Support Community Offers education, support (emotional
www.abta.inspire.com
and financial), advocacy and guidance
ABTA connects patients, families,
to brain tumor patients. Online
friends, and caregivers for support
support groups and opportunities to
and inspiration.
participate in fundraisers for brain
tumor research are also available.
Respite Care and Palliative Care
Respite care is short-term, temporary
relief to caregivers who are providing
full-time support to an ill loved one.
Respite offers intensive care for the
patient in their home so a caregiver can
take a break. It often provides a positive
experience for everyone involved. You
can contact a respite care organization
when you need time away.
66
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
M O V I N G F O R WA R D
Palliative care is a service used at any
A diagnosis of advanced brain cancer can
TO ACCESS RESPITE CARE
SERVICES IN YOUR AREA
FOR YOU OR ANOTHER
CAREGIVER, TRY:
point in a patient’s experience to help a
caregiver with the management of pain
and other symptoms. Palliative care has
the goal of achieving comfort, managing
•
symptoms, and improving a patient’s
quality of life. Palliative care professionals
may come to a person’s home to deliver
•
care and to teach caregivers how to
manage problems. Check with your
insurance, and you can ask your hospital
•
or doctor for a referral.
Arch National Respite
Organization
archrespite.org/respitelocator
Caregiver Action Network
202-772-5050
caregiveraction.org
make you wonder how long your loved
one has to live. It’s frightening to envision
a different future than you originally
planned for yourself. It can also be
difficult to talk about such painful topics.
Finding ways to talk about what is
happening makes most people feel
relieved. The conversation often leads
to hopes about living the life you have
amily Caregiver Alliance
F
1-800-445-8106
www.caregiver.org
together now. Often, people want to
make the most of their time together
with family, as they make peace with the
circumstances. Perhaps these can be
uplifting conversations that give you both
a sense of peace.
One day Gary turned to me and said, “will you marry
me?” and I said, “we’re already married.” And he said,
“no, the first time I asked you was for who I thought
you’d be, now it’s for who I know you are.”
— Candice, caregiver
CHAPTER 7 / CARE FOR THE CAREGIVER
67
B E R E AV E M E N T
If you try to discuss the subject but your
Losing someone you love to cancer is
loved one isn’t ready, know that we all
one of the most difficult and profound
have our own timing. Finding someone
experiences in life.
else you can talk to about your concerns
when you’re ready is important. Research
shows that caring for someone with a
brain tumor is just as stressful (but in a
different way) as having the diagnosis.
In the weeks and months after a death,
people feel an enormous mixture of
emotions. It is important to know that
practically any emotion you experience is
normal. Sadness can also involve physical
As with other difficult emotional issues,
symptoms, such as sleeplessness, muscle
you can contact a social worker or
tension, and decreased energy.
counselor skilled in working with people
with a brain tumor, or talk to a spiritual
leader that you trust.
Be assured that you will feel a sense of
calm eventually. You must give yourself
time to grieve.
Some people move quickly through grief;
others move slowly. No matter how you
grieve, it is important to become aware of
the normal aspects of grief, feel it, then be
okay to move on.
68
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
My dad was
diagnosed when I
was eleven and he
passed when I was
14. When my dad
worked, he was on the road a
lot. So when he got sick, we joked
that we were really lucky to have
a stay-at-home dad for three
years. We got to know him really
well those years – and if he died
any other way, that would not
have been the case.
— Natalie, caregiver
— Candice, caregiver
Resources
CHAPTER EIGHT / RESOURCES
When my husband was
diagnosed, I wanted to stay
in touch with others but
didn’t have a lot of time, so I
made a group on Facebook.
I posted every couple of
days and I got so much in
return. For example, I’d ask:
could somebody help me
with research? I’d get lots
of answers. It’s an amazing
tool. My community even
set up this caravan of
dinners. This gave me the
love and support that I
needed to stay strong.
CHAPTER EIGHT / RESOURCES
CHAPTER 8 / RESOURCES....................................................... 69
Cancer Support Community’s resources for support......................................... 72
8
Resources
Brain Tumor
Specific Support
Accelerate Brain Cancer Cure
202-419-3140
www.abc2.org
ABC2 aggressively invests in
bold and innovative research
and drives collaboration to
speed the development of
new and effective treatments
for brain cancer patients.
American Brain
Tumor Association
800-886-2282
www.abta.org
ABTA raises funds for brain
tumor research and education;
their website offers information,
education, and support.
American Cancer Society
800-227-2345
www.cancer.org
ACS offers information about
brain tumors, treatments, and
managing life with the disease;
a search tool helps locate support
groups; ACS offers the Health
Insurance Assistance Service.
American Society of
Clinical Oncology /
Cancer.Net
888-651-3038
www.cancer.net
Cancer.net is a resource for direct
and accurate information about
cancer treatment based on the
expertise of clinical oncologists.
The Healing Exchange
Brain Trust
877-252-8480
www.braintrust.org
T.H.E. Brain Trust runs online
support groups and forums for
discussion on all brain tumors for
patients, providers, researchers,
educators and caregivers.
CancerCare
800-813-4673
www.cancercare.org
CancerCare provides free,
professional counseling and
support groups to individuals,
families, caregivers, and the
bereaved. CancerCare’s CoPayment Assistance Foundation:
www.cancercarecopay.org.
Imerman Angels
312-274-5529
www.imermanangels.org
Imerman Angels matches
anyone seeking cancer support
with someone just like you – a
“Mentor Angel” who is the
same age, gender, and has
beaten the same type of cancer.
Cancer Support Community
888-793-9355
www.cancersupportcommunity.org
CSC provides support,
education and hope to all
people affected by cancer
including personalized services
at no cost.
LIVESTRONG Foundation
855-220-7777
www.livestrong.org/
cancersupport
The LIVESTRONG Foundation
provides information and
tools to help people affected
by cancer. LIVESTRONG
Navigation Services offers free
referrals to counseling and
other resources in your area.
Musella Foundation for
Brain Tumor Research and
Information
888-295-4740
www.virtualtrials.com
Musella Foundation offers
education, support (emotional
and financial), advocacy and
guidance to brain tumor
patients. Videos, articles,
online support groups, and
information about fundraisers
for brain tumor research are
also available.
National Brain Tumor Society
800-770-8287
www.braintumor.org
NBTS drives strategic research
to find new treatments and
advocates for policies to meet the
critical needs of this community.
CHAPTER 8 / RESOURCES
69
National Center for
Comprehensive and
Alternative Medicine
888-644-6226
www.nccam.nih.gov
NCCAM is the Federal
government’s lead agency
for scientific research on
the practices known as
comprehensive and alternative
medicine (CAM). NCCAM offers
information on the value and
legitimacy of CAM practices.
Financial and Legal
Assistance
National Cancer Institute
800-422-6237
www.cancer.gov
NCI is the premier agency for
cancer research, training and
information in the US Federal
Government. Their website
has valuable information for
all people affected by cancer –
including search tools for
clinical trials.
Cancer and Careers
646-929-8032
www.cancerandcareers.org
CAC educates people with
cancer to thrive in their
workplace. Look online for free
publications, career coaching,
and support groups for
employees with cancer.
70
Brain Tumor Copayment
Assistance Program,
Musella Foundation
855-426-2672
https://braintumorcopays.org
This program provides up to
$5,000 in financial assistance
per year to families who qualify
and use certain drugs to treat
brain tumors.
Cancer Legal Resource Center
866-843-2572
www.disabilityrightslegalcenter.
org/cancer-legal-resource-center
The CLRC provides free and
confidential information and
resources on cancer-related
legal issues for anyone coping
with cancer.
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
Co-Pay Relief Program
866-512-3861
www.copays.org
The CPR program provides
financial support to insured
patients who qualify to
access pharmaceutical co-pay
assistance. The program offers
call counselors who guide
patients through the enrollment
process.
Corporate Angel Network
866-328-1313
www.corpangelnetwork.org
Corporate Angel Network is
a non-profit organization that
arranges free air transportation
for cancer patients traveling to
treatment using the empty seats
on corporate jets.
Healthcare.gov
The new Federal website
offering customized information
about the various health
insurance options for which
you may be eligible, including
comprehensive information
about Medicare and Medicare
Services through CMS
(www.cms.gov).
LawHelp.org
www.LawHelp.org
LawHelp helps low and
moderate income people find
free legal aid programs in their
communities, answers questions
about legal rights, and helps
with their legal problems.
National Cancer Legal
Services Network
www.NCLSN.org
NCLSN is a coalition of legal
service providers who offer
some free legal services
programs to people affected
by cancer.
National Coalition for
Cancer Survivorship
877-622-7937
www.canceradvocacy.org
NCCS offers free publications
on insurance and employment
issues for people coping with
cancer. The Cancer Survival
Toolbox is an audio-program
that includes a section on
Finding Ways to Pay for Care.
NeedyMeds
www.needymeds.org
NeedyMeds is a free, online
clearinghouse to help people
who cannot afford medicine or
health care costs. This website
includes information about
services such as Discount Drug
Cards, Medicaid websites,
Federal Poverty Guidelines, and
other useful information.
Partnership for Prescription
Assistance
888-477-2669
www.pparx.org
The PPA is a coalition of
pharmaceutical companies,
doctors, other health care
providers, and community
groups that help qualifying
patients get the medicines
they need. The website offers
access to more than 475 public
and private patient assistance
programs, including more
than 180 programs offered by
pharmaceutical companies.
Patient Access Network
Foundation
866-316-7263
www.panfoundation.org
PAN Foundation provides
assistance to underinsured
patients. Patients or a member
of their medical team can apply
online or over the phone; a
determination for assistance
is generally made within one
business day.
Survivorship A-Z
www.survivorshipatoz.org/
cancer
Survivorship A-Z is a web-based
resource providing practical,
legal and financial information.
The site includes the ability to
make a computer-generated
profile, personalized to your
legal, financial, and social
situation.
Patient Advocate Foundation
800-532-5274
www.patientadvocate.org
PAF offers information about
financial resources and
mediation services to assure
access to care, maintenance
of employment, and financial
stability. Look for the
Underinsured, Uninsured, and
Financial Resource Directories,
with information about
alternative coverage options
(www.patientadvocate.org/
resources).
CHAPTER 8 / RESOURCES
71
Cancer Support Community’s Resources for Support
Cancer Support Community’s resources and programs below are available at no charge.
CANCER SUPPORT HELPLINE ®
OPEN TO OPTIONS™
THE LIVING ROOM, ONLINE
Whether you are newly
diagnosed with cancer,
a long-time cancer
survivor, or are caring for someone with
cancer, CSC’s TOLL-FREE Cancer Support
Helpline (1-888-793-9355) is staffed by
licensed CSC Call Counselors available to
assist you Mon-Fri 9 am-8 pm ET. Our Call
Counselors have been specially trained
to answer your questions and link you to
valuable information.
Free one-on-one decision
counseling is available with
licensed mental health
professionals who can help you process
information about your situation, and
formulate a list of specific questions for the
oncologist. Appointments can be made
by calling 1-888-793-9355 and by visiting
the CSC website to contact an affiliate
providing the Open to Options service.
Cancer Support Community’s “The
Living Room” offers much of the same
programming available at each CSC
affiliate. On CSC’s website you will find
online support groups, discussion boards
and social networking, “build your own
website” services, and education materials.
CANCER EXPERIENCE REGISTRY
To access these services, visit
www.cancersupportcommunity.org
AFFILIATE NETWORK SERVICES
Almost 60 locations plus more than 100
satellites around the country offer on-site
support groups, educational workshops,
yoga, nutrition, and mind-body programs
specifically designed for people affected
by cancer. For a full list of affiliate locations,
visit the Cancer Support Community
website or call us at 1-888-793-9355.
72
SM
The Cancer Experience Registry is a
movement designed to help CSC better
understand the social and emotional
needs of people living with cancer so
that we and others can develop new
resources to support the millions of people
living with cancer every day. The Cancer
Experience Registry collects information
about the experiences of people who
have volunteered to share their cancer
journey in a survey, and connects them
to a network of resources. Join today at
CancerExperienceRegistry.org.
F R A N K LY S P E A K I N G A B O U T B R A I N T U M O R S
These services are made available with
generous contributions from CSC supporters.
Cancer Support Community and the National Brain Tumor Society would like to recognize and thank all of those who
contributed to the success of this book.
CONTRIBUTORS & EDITORS
C O N T R I B U T I N G PA R T N E R S
DESIGN & PHOTOGRAPHY
Deanna Glass-Macenka, RN, BSN, CNRN
Johns Hopkins Hospital
Accelerate Brain Cancer Cure
Nicola Beddow
Suzanne Kleinwaks Design, LLC
Design
Lora Hays, L.M.F.T., R.P.T.
Cancer Support Community Central Indiana
Cancer Support Community
Allison Harvey, MPH, CHES
Ralph Alswang
Photography
Ashley Varner, MSW, MBA, LCSW-C
Anne Arundel Medical Center
Johns Hopkins Brain Tumor
Education Group
Musella Foundation
Al Musella, DPM
Erica Weiss, MPH, MSUP
Writer/Editor
National Brian Tumor Society
Kristina Knight
Michele Rhee, MBA, MPH
We’d like to extend a special thanks
to focus group, interview, and survey
participants who shape the information
provided in this booklet.
Patrick Y. Wen, MD
Dana-Farber Cancer Institute
CA N C E R S U P P O RT C OM M U NITY’ S FRA N KLY SPEA KIN G A B OU T CA N CER SERIES
Cancer Support Community’s Frankly Speaking About Cancer: Brain Tumors program is part of a national education program that
provides support, education, and hope to people affected by cancer and their loved ones.
Frankly Speaking About Cancer booklets feature information about treatment options, how to manage side effects, the social and
emotional challenges of the diagnosis, and survivorship issues.
For more information about this program, the Frankly Speaking About Cancer series or Cancer Support Community, please visit our
website at www.cancersupportcommunity.org or call us toll-free at 1-888-793-9355.
W W W . C A N C E R S U P P O R T C O M M U N I T Y. O R G
1.888.793.9355
Cancer Support Community and the National Brain
Tumor Society together with our partners provide
this information as a service. This publication is not
intended to take the place of medical care or the
advice of your doctor. We strongly suggest consulting
your doctor or another health care professional to
answer questions and learn more.
© 2013 Cancer Support Community. All rights reserved.
C A N C E R S U P P O R T C O M M U N I T Y A N D T H E N AT I O N A L B R A I N T U M O R S O C I E T Y
T H A N K O U R P R O G R A M PA R T N E R S :